And this is all in addition to your position with the healthcare arm of Cisco’s Internet Business Solutions Group (IBSG).

One of the reasons that I am so pleased that you agreed to talk with me on the phone several months ago, Dr. Sands, is that like many people in healthcare I spend a lot of time reading grant announcements and it has been really fascinating to note how so many of the tenets and principles of Participatory Medicine you have been working so tirelessly and so eloquently to put onto the public policy agenda and onto the radar screens of everyone in healthcare are indeed making such an impact that they color the very wording used by federal grant-making agencies in their announcements of funding opportunities. Clearly, your work in changing the nature of how medical care is delivered in the US and internationally has made it clear that Participatory Medicine is not something out on the futuristic periphery but is affecting who will get funded and what technologies will be developed. This is very exciting and important.

I thought of you and your work, for instance, as I read through several federal healthcare-related grant announcements the other day and especially as I read through this one,
Exploratory and Developmental Grant to Improve Health Care Quality through Health Information Technology.

This wording seemed straight out of your playbook, for instance,

“The field of consumer health informatics focuses on providing consumers, patients and their caregivers, health information directly through computers and other telecommunication systems (Eysenbach, 2000). Meeting patients’ and caregivers’ increased need for health information may improve communication between health care providers, patients, and their caregivers. This may enhance patients’ abilities to self-manage chronic conditions and enhance their ability to follow treatment, medication, and monitoring regimens. Through improved control of disease there may be increased functionality and quality of life and fewer exacerbations of chronic conditions that necessitate emergency room visits and hospitalizations.

The body of literature regarding successful implementation of health IT in non-traditional ambulatory settings, such as in homes, residential settings, and various types of community centers, is underdeveloped. Successful health IT implementation in these ambulatory settings may provide much-needed tools to improve health care for various vulnerable populations including the elderly…”

Now, there are several aspects of that passage that I would like to ask you about. For example, it references Gunther Eysenbach who is generally regarded as the driving force behind Medicine 2.0.

Could you please tell us a bit about how you see Medicine 2.0 and how it differs from Health 2.0?

I view them as interchangeable, but if one were to split hairs, Medicine 2.0 is more focused the providers delivering care and Health 2.0 does not necessarily depend on providers at all.

And are you at all surprised by the fact that the policymakers are starting to require evidence from potential grantees that the latter are meeting the increased demands by e-Patients for clinical and not just-consumer level health data? For example, at the Medicine 2.0 conference in September 2009 the keynote was delivered by e-Patient Dave. His talk was memorably entitled, “Gimme My Damn Data!”

I believe that patient engagement (participatory medicine, call it what you will) is the right thing to do, but we need more evidence to support this contention, otherwise businesses will not invest and in it and health plans and governments will not pay for it.

Do you think health networks and community hospitals are starting to spot wording colored by exposure of grant makers to the tenets of Participatory Medicine? This is a crucial matter for healthcare institutions large and small who are hoping to garner grant funding to help pay for the gargantuan expenses of healthcare IT projects, correct?

Realistically, most health systems are focused on current reality. That reality is payment for quantity care, less for quality care, and no consideration for the continuum of care. While this may change, if we have significant health payment reform, it’s hard for health systems to change their way of doing business and ignore their revenue sources today. That’s not to say all systems think this way–some are retooling their systems to manage quality across the continuum of care–but most are still focused on high revenue procedures in the current environment.

However, health systems and practices are also focused on obtaining federal incentive funds (from the HITECH Act), which provides cash rewards for demonstrating “meaningful use” of certified electronic health records. In these proposed “meaningful use” criteria there is an expectation of giving patients electronic access to their medical records and a few other patient centric rules, but the criteria have not yet been finalized.

Are you starting to see an increased level of awareness by healthcare administrators and executives that they need to start showing responsiveness to this surge of interest by patients in optimal access to their personal health data?

To a certain extent, but it has to make business sense before they begin investing. Many hospitals are struggling to maintain their businesses, so they view this as a “nice to have,” rather than a “have to have.” Exceptions are hospitals that perform elective procedures not covered by insurance. That said, I believe that focusing on customer services makes good business sense, as some health systems find that if they can provide a superior customer experience it serves to attract business. Technology can be helpful here, by the way, as we’ve learned in financial services and some retail settings.

Do you think that registered health information administrators and others in the health information management field are even aware of the e-Patient movement?

No, I think we are early in the game. How many hospitals have chief experience officers today?

Are you starting to see more attendance by all of those groups at gatherings that feature you and e-Patient Dave as speakers?

Yes, it is picking up.

Indeed, you serve as one of the few people who serve as connectors between Participatory Medicine advocates and those such as many in healthcare IT and in hospital medical record departments who have been much more prone to hunker down and think, “HIPAA, HIPAA, HIPAA” and “hackers lurk in every corner.” Could you please give us examples of how Cisco’s Internet Business Solutions Group is assisting hospitals and healthcare networks balance the need for secure systems versus the growing desire by patients to access to their own data (and could you address the matter of whose data it actually is in various instances?)

There are many aspects to security and privacy. Some are related to technology–which involves both hardware (network, data center) and software (applications)—and others are related to people issues—policies and procedures. Both are needed to provide a robust environment that protects patient’s data and privacy.

On the hardware side, Cisco creates technology that protects networks and data centers. The IBSG pioneered the Medical Grade Network architecture, that creates networks that are secure, resilient, and flexible. Next, we provide data center solutions with a focus on security. IBSG then helps customers understand the patient experience and the future of the continuum of care. Clearly information technology, home monitoring, transparency, and patient engagement are a cornerstone of this, and the IBSG is working in all of these areas.

Do you think that the world of clinical research is going to be affected in similar fashion such as by increased responsiveness by the NIH (as evidenced by such bodies as the Director’s Council of Public Representatives) to demands by citizen activists for more public input on the allocation of tax money for the funding for clinical and public research? Are we seeing a real revolution in demands for greater transparency at all level of healthcare from what research is funded (such as pressures from such groups as the Alliance for Taxpayer Access to people like e-Patient Dave who want their damn data?

I’m all in favor of transparency and public input. Private foundation and corporate funding is not subject to much influence from the public, but Federal research dollars are sometimes earmarked for particular types of research under pressure from Congress, which is in turn influenced by constituents and lobbying groups. It’s not a perfect system, for sure.

Finally, we need greater access to clinical trial results. We have gone a long way towards that but still have far to go.

On a related note, are you excited by Harvard’s pioneering move to mandate Open Access to the work of its researchers?

Have you seen any evidence that this policy is affecting the research and publication practices of your colleagues of Harvard Medical School?

I have not seen its impact yet.

When you and I spoke on the phone, you said so much that was truly fascinating that as I look at my notes now I find them a bit of a jumble as I struggled to keep up with what you were saying. I asked you, for instance, what you see as several key developments to watch for vis-à-vis healthcare delivery and technologies. You mentioned several in particular:

• Care at a Distance
• Immersive Technologies
• Aging in Place
• Participatory Medicine

We have already discussed Participatory Medicine a bit. I would like now to ask you about Care at a Distance. As you know, I have talked a bit to Roy Schoenberg, MD, MPH the president and CEO of American Well Systems
and have written about American Well. I was quite interested in the fact that he was your student at Harvard (what was the class, specifically?)

Roy was an informatics fellow in my department, and I hired him. The department is currently called the Division of Clinical Informatics at BIDMC (formerly known as the Center for Clinical Computing). Fellows, usually after their medical or nursing training, spend 2-4 years in which they learn clinical informatics.

You mentioned on the phone that you see the Online Care services that American Well offers to healthcare plans as part of a continuum of care that could be complemented by some of Cisco’s products and services and mentioned Cisco’s HealthPresence in particular. Could you please give us examples of how such immersive technologies as HealthPresence would work in a world in which the first stop for a homebound chronically ill and/or elderly person (especially in a rural area or, say, in a crime-blighted urban one) might be an Online Care video conference via the American Well interface? Might a provider following such a conference arrange for the patient to visit a site at which HealthPresence is available? Might such sites be, say, senior centers or even onsite in the very assisted living facility the elderly person might be living in?

The idea is that a patient who may not be ill enough to be seen emergently or can’t be seen in a physician’s office, might start by contacting a physician online through AW. If the person was too ill to be managed through online chat or webcam interview, they could be referred to the nearest Cisco HealthPresence unit, which might be much closer than a medical office or hospital. The escalation would therefore go through CHP, rather than directly to the doctor’s office.

Who else might be interested in HealthPresence? Public health departments that serve rural clients or migrant workers? Prisons? Physician clinics that might utilize them at satellite offices? Hospitals and health networks that would see them as valuable extenders of their existing home healthcare networks?

There are a host of use cases for CHP, including:

• Clinical scenarios
o Patient-physician consultation
– Primary care
– Specialty care
o Physician-physician consultation (with patient)
o Urgent care
o Ongoing care
o Disease management
o Follow-up
• Locations
o Hospitals that lack specialist care
o Underserved rural or urban areas
o Retail settings
o Employee health clinics
o Correctional facilities
o Schools
o Battlefields
o Long-term care facilities
o Assisted living environments
o Others…
• “Owners”
o Hospitals/health systems/long-term care provider
o Community health centers
o Physician groups
o Health plans
o Government agencies
o Non-governmental agencies
o Retail chains
o Others…

I asked you on the phone if some healthcare administrators of brick and mortar institutions regard such innovative technologies and the whole concept of Care Anywhere as an existential threat to hospitals as we know them now (i.e. as buildings that we as patients and providers must travel to) and you made the interesting point that quite to the contrary—that many executives see Care Anywhere as both a public service and a way to extend revenue-generating existing services to an ever broader geographic area as well as facilitating monitoring of patients that ensures that they will not experience setbacks that send them right back to the hospital (and such rehospitalizations are often not covered by Medicare, thus imposing a financial hardship on patient and hospital alike).

Could you tell us a bit more about HealthPresence?

This is best discussed over the phone, but we have plenty of material, including descriptions and video here.

Would it be somewhat like a clinic in a box?

No, it replicates a medical, office at a distance using the network as a platform to deliver a high fidelity interaction.

Can modules be added to it as needs for services are determined over time?

Different clinical scenarios are manageable through different staff and different types of medical instrumentation. For example, a psychiatrist may need nothing (or only vital signs), while a cardiologist may require a stethoscope, an electrocardiogram, and an echocardiogram.

Are there models for specific health conditions (e.g., for diabetes)?

We are developing these models with our customers based on our experience.

Is it being used in the US at this point?

Yes. It is being used to provide healthcare to employees at Cisco campuses in San Jose and Research Triangle Park to employees at Cerner in Kansas City, MO, and it’s also being used by United Healthcare , and some of our health system customers are starting to deploy this, as well.

Is Cisco working with healthcare institutions on research that would address the wording that we saw in the grant mentioned above, “The body of literature regarding successful implementation of health IT in non-traditional ambulatory settings, such as in homes, residential settings, and various types of community centers, is underdeveloped…?” Indeed, you mentioned on the phone that the Cisco Internet Business Solutions Group specializes in working with clients to test and implement such novel technologies. Could you discuss some of those projects and the IBSG’s role as thought leaders in healthcare and healthcare technology? Who else on the healthcare technology landscape is providing such cutting-edge consulting services?

As we work with customers on deployments we evaluate the impact of the projects and lessons learned. When possible, we work with partners to publish this, such as we did with our Aberdeen, Scotland pilot with the Scottish Centre for TeleHealth.

Could you please discuss the idea of Aging in Place?

Ageing Well in a Connected World is an area of thought leadership and demonstration projects that focuses on helping ageing citizens remain healthy, socially connected, independent, and working as long as they are able, facilitated by connected technologies. It is being executed a cross-industry, global IBSG project, primarily our public sector and healthcare teams.

When I saw you serve on a panel of judges of new technologies showcased at Health 2.0 in October of 2009 you and your fellow judges would often say something to the effect of, “Love the product. Pretty cool—but who is going to pay for it?” Do you think that we are getting to the point when such issues will be decided on the basis of pretty sophisticated research studies that will persuade policy makers and businesspeople that hospitals will pay for this, patient themselves out of pocket for that, health plans for thus and so and the federal government for such and such because some technologies are so obviously in the interest of each party in various circumstances. Could you provide examples of three such technologies vis-à-vis Aging in Place and tell us who you think will end up footing the bill and why they would decide to do so? Duress or just hardheaded number crunching? Do you think we are, under the pro-healthcare IT Obama administration, at a tipping point when it comes to Aging in Place technologies vis-à-vis cost effectiveness, reliability and true contribution to quality of life that soon such products and services will actually make it into the households of the elderly? What is one such product that has a wow factor for you?

In order for any technology to be adopted by the mainstream user, which is generally necessary for the survival of any company that provide a product or service (the exception being a government-subsidized entity), people must be willing to pay for it. This will come about when buyers (consumers, other companies, governments) see the value in this product or service. This may be an intangible value or utility (like an appliance or a consumer electronics product), but in this case it’s usually net economic value. This can only be assessed by implementing the technology and studying its impact.

This is even more important today. It is true that we face a graying population that places a high burden on western societies, but it is also true that we are more resource constrained than ever before. So we must prove the value of these potentially transformational projects, otherwise they will not be sustainable.

I asked you on the phone whom you consider important figures in the area of Participatory Medicine and you mentioned your colleagues at the Society for Participatory Medicine, Ted Eytan, MD,
and Kevin Leonard.

I hope I mentioned more than that. Alan Greene, e-Patient Dave, Susannah Fox, Charlie Smith, and many others, as well.

What conferences do you suggest those interested in Participatory Medicine attend and what professions are not attending those meeting that should? Hospital CEOs? The heads of hospital marketing departments (and do you see an open mind towards the use of Web 2.0 and social media and their use in the realm of Participatory Medicine as offering a competitive advantage to healthcare institutions that make that leap and tell us what institutions do you regard as exemplars in that respect)?

There are not that many conferences that focus squarely on PM yet, but conferences like the Connected Health Symposium, Health 2.0, Medicine 2.0, and even mHealth have strong PM components. More exciting to me are the mainstream healthcare conferences that are starting to have major presentations or tracks in topics related to participatory medicine.

I think we are seeing marketing people attend these already, but we need more CEOs and other business leaders. Those that come today already “get it” and are thinking about what they can do to engage their customers (patients) better by leveraging technology. We may not get more until we a) start demonstrating value, and b) health system reimbursement starts being linked to patient experience.

Where do you plan to speak in the next year?

I don’t know all of the presentations I’ll be doing yet. I do know that I’ll be running a Meet the Professor session on 21st century communication and social media at the Internal Medicine 2010 in Toronto in April, I’m supposed to do a keynote presentation on participatory medicine at Kevin Leonard’s One Patient One Record which I think will be in Ottawa in April, and I’ll be presenting at a New England HIMSS meeting in the Boston area. I don’t have my fall schedule set yet. I’m always interested in opportunities to wave the banner.

I notice that you tweet but do not seem to blog. Just too busy for the latter? Whom do you consider must reads in Twitterdom, the blogosphere, and the medical press?

I haven’t found the time for blogging, but I do write occasionally (one I wrote is on why I believe in participatory medicine here) and I comment on other blogs, as well. I do like Twitter.

e-patients.net
Geek Doctor
Ted Eytan.com
The Health Care Blog
Musings of a Distractible Mind
e-Patient Dave
HIS Talk
Running a Hospital
And others…

Finally, who are your personal heroes in medicine, technology, academia and in any other realm?

I don’t have a good answer for you because I don’t really think of people that way.

Thank you for your time, Dr. Sands.

You’re welcome.

But I would like to introduce you to the wider health technology and Open Science communities given your ability to recognize important technologies, tools and trends in the area of scientific and scholarly communication and your skill in explaining their use and recognizing their potential for many tasks. You are an educator and explicator supreme.

I envision as readers of this interview not only medical librarians and sci/tech librarians but anyone in the healthcare industry who needs information from time to time—and that is basically everyone in healthcare. Therefore, readers of this interview might include physicians, nurses, pharmacists, physical therapists, healthcare administrators, healthcare informaticians, those in the fields of biomedical/clinical research, health information management and so on.

Moreover, I think that much of what you have to say will be of interest to the increasing numbers of empowered patients, known as e-Patients, most notably exemplified by people like e-Patient Dave and by readers of the site e-patients.net, which is run by the Society for Participatory Medicine.

E-Patients are a new breed of patients. They are sophisticated, determined seekers of healthcare information and medical librarians are going to encounter more and more of them and you are just the man to help those two groups get to know each other.

Finally, I would like to introduce you to those interested in the area of Open Science and scholarly communication in general. People like Jean-Claude Bradley, Cameron Neylon, Antony Williams, John Wilbanks, and Bora Zivkovic are changing the very nature of how science is done and how research results are disseminated and I would like to get your views on how what they doing is going to affect us in the field of healthcare farther down the pipeline. Could you introduce yourself as if you were addressing this wide audience?

Hi, my name is Dean Giustini; I am a Canadian academic health sciences librarian and blogger living and working in Vancouver, British Columbia. I am a biomedical librarian at University of British Columbia’s main teaching hospital in a new building called the Gordon and Leslie Diamond Health Care Centre. My main responsibilities are to provide library, research and instructional support to UBC faculty and students at Vancouver General Hospital; I am also responsible for managing the onsite staff and collections of monographs and journals that support the academic and clinical activities onsite. Academically, I teach two courses at UBC’s School of Library, Archival and Information Studies; 1) a new course on social media and 2) a traditional course on health librarianship.

My main extracurricular interests are related to web technologies in medicine. I enjoy providing information services to hospital personnel and teaching information literacy skills to medical students, but I enjoy collaborating with physicians using social media and Web 2.0 applications. I am a traditionalist librarian in my views but try to find the potential in digital interaction and web technologies in my work as well.

I first became aware of you around 2004-2005 when I was new to the field of medical librarianship and learning about how the Web was affecting how medical people acquire information. You were one of the first to address this topic in a very public and influential way with your 2006 article in the British Medical Journal, “How Web 2.0 is Changing Medicine.” Could you please tell us a little about what led to the publication of that piece, your reaction to the reactions to it and what has surprised or disappointed you vis-à-vis developments in the years since it was published?

That’s an interesting question. First of all, I was quite amazed by the interest that the BMJ web 2.0 editorial got – and how how often it is cited. It is an opinion piece not research. I had no idea it would be important when I wrote it. It was easy to write because I believed that social media would be important for all of us. And I could see how digital interaction using social media would be important to collaborative science. In retrospect, I can see why web 2.0 was controversial; even now biomedical librarians are debating the importance of web 2.0. The field of medicine and science has moved on from the squabbles around what ‘web 2.0’ means and whether it exists but perhaps the phrase ‘social media’ is more appropriate than the 2.0 suffix in discussing the technologies of the era.

In any case, I keep waiting for the National Library of Medicine (NLM) to create a MeSH for web 2.0. Since the BMJ editorial, Eysenbach has defined medicine 2.0 and the 2.0 suffix is used for everything including for all kinds of marketing purposes. The most important aspect of web 2.0 is that the tools help us to build networks and take advantage of “Metcalfe’s Law” – the network effect – for collaboration. Although physicians are building silos around their networks in private spaces patients are very openly sharing information about themselves. I doubt there is much digital interaction between the two groups yet; I only know what physicians and patients tell me that they are starting to enjoy using the tools. I am not sure that the changes we are seeing in how patients and doctors communicate online comes close to what we see when patients interact with each other. It’ll never be equivalent because doctors operate within very different parameters of practice.

In that article you said, “For me, the promise of open access in Web 2.0—freed of publishing barriers and multinational interests—is especially compelling.” Where are we now in that respect?

When I wrote that line about the synergy between web 2.0 and open access I was referring to the publishing potential of social media and OA journals. Much of this potential remains unrealized. I have been disappointed by the poor performance of wikis versus the surprising growth of open access. Since the editorial, I got involved in Open Medicine – one of Canada’s open access journals. We are making progress and NLM accepted us recently for Medline (PubMedCentral) indexing. It’s been a long, arduous path, but we did it in two years.

You said in that piece, “The rise of wikis as a publishing medium—especially Wikipedia—holds some unexamined pearls for the advancement of medicine. The notion of a medical wikipedia—freely accessible and continually updated by doctors—is worthy of further exploration.” What do you think, then, of the Medpedia Project, other players such as Google’s Knol, and the fact that Wikipedia is experiencing an exodus of editors.

I am happy with the development of HLWIKI Canada (formerly the UBC Health Library wiki). But as a team of writers and health librarians, we are only beginning to use the wiki as a collaborative space and platform. One of the problems is that I write most entries. I continue to believe that medical/physician and librarian-moderated wikis can play a role in biomedical publishing but some wikis have simply not caught on – and no where near what we have seen with Wikipedia. I’m not sure what the reasons are, but PageRank in Google has helped Wikipedia move up to the top of search results. These factors have an impact on whether your wiki will be seen and used.

Occasionally, I check out what is happening at Google’s Knol. I read an article recently and compared it with Medpedia. Despite the support Medpedia has, I am not sure how it is doing. When I go to the site I am left with a feeling of ‘so what’ – can’t we do better? AskDrWiki and Ganfyd are good wikis but again they are not very well-known. I worry that the ‘free’ remix culture espoused by Chris Anderson and Lawrence Lessig has hit a wall of some kind and that people are tired of contributing with no recognition. Perhaps this is Wikipedia’s problem too. At some point, folks bail out and try something else.

Do you see wikis as less useful for medicine than was first thought or are there are wikis run by those in certain medical specialties that are thriving and that it is only the general interest ones that seem to be hitting a wall? How is the Open Medicine wiki project going, for instance, which you wrote about in the post “Can Wikis be Used as a Publishing Platform in Medicine?”

The Open Medicine wiki has suffered from the same fate as the wikis we’ve mentioned above. The main issue is that maintaining a wiki is a lot of work and you need an army of writers, editors and volunteers. The wiki is a labour of love –I do a lot of promotion of it whenever I can. I cannot contribute to the Open Medicine wiki because I am not a physician. I think that the OM wiki is worth a try, but I wonder about its staying power. I often have trouble getting docs to use PubMed properly, so how can I convince them to contribute to building a wiki? It’s uncertain.

What do you see as the future of a user-generated content in medicine in general, whether by patients in such online communities as PatientsLikeMe or by medical people for each other in gated communities such as Sermo or by the quite interesting attempt to enlist both practitioners and patients in the form of audiences and contributors in the Journal of Participatory Medicine.

User-generated content where social tools are used in medicine will continue to evolve in ‘specialized niche areas.’ I worry about these niches because they engender ‘bias.’ Typically, we friend people we agree with and ‘block’ those we don’t agree with; this prevents disagreement. You mention the consumer health social space PatientsLikeMe and the physician social networking site Sermo – generally viewed as two successful examples of social media. The last report I heard, AMA had severed its relationship with Sermo because it did not have enough say about the direction of Sermo. When it started, Sermo was an ‘adverse reporting’ system and it morphed into a social networking site. The lesson is that medicine is still monolithic and apt to change in time. The veil of secrecy cannot be removed overnight; patriarchy will change over time. The ‘wedge’ or tipping point for social media will probably be in the area of online consultations and finding ways to compensate doctors for their time.

Getting back to the matter of the inaugural issue of the Journal of Participatory Medicine, could you comment on one of the most interesting articles in it, “In Search of an Optimal Peer Review System?”

What, for instance, is your reaction to that article given that it is by Richard Smith, someone closely associated with the British Medical Journal, the very periodical that published your own article on the Web and medicine? What do you think of Smith’s comments, for instance, “I think that it would make much more sense simply to publish the paper — on a university website or in an electronic journal with a low threshold — with my comments and those of the other reviewer and let the world decide what it thinks. That is anyway what happens in that many peer-reviewed papers disappear without trace after publication, some are torn to pieces, and a few flourish and are absorbed into the body of science.” And, “Web 2.0, the social web, may hold the key to the future of peer review. Peer review will become the job of the many rather than the few, and we know that the many can solve problems better than the few…”

I enjoy Richard Smith’s ideas and thinking about web 2.0. He is on the Editorial Board of Open Medicine. His views are very progressive. He is trying to make his profession more transparent and accountable to patients. When a high profile person discusses peer review and publishing papers on accessible websites for all to see and critique –I listen. There is a downside to open peer review – poor bibliographic control. What Smith may or may not know is that researchers publishing openly on the web would create chaos – how would we find anything? How would studies be comprehensively indexed? This is a big problem of the information age. When you take advantage of anytime, anywhere publishing — you also fragment the medical bibliography and make it more difficult to organize.

And on a related topic, do you see the recent moves by Harvard and MIT to mandate Open Access policies as momentous vis-à-vis mounting a genuine challenge to the power of the big publishing houses and creating a workable model of Open Access publishing that other universities could follow, thereby creating a world in which scholarly publishing and clinical research could indeed be freed of the fetters of the tyranny of antiquated publishing practices that hinder the advancement of science and impede efforts to help patients farther down the line? Or are the publishers simply too powerful and the forces of tradition vis-à-vis peer review, and tenure and promotion practices simply too entrenched for radical change? Are the Harvard and MIT policies the tipping point for an Open Access world or noble but ultimately fruitless endeavors? Are they harbingers of real change that will affect the day-day-day lives of clinical researchers and, therefore, farther down the line, medical providers and medical librarians?

In an ideal world “Why can’t we all get along”? Universities, multinational publishers and institutional repositories such as PubMedCentral should be working together and building partnerships. I am surprised a public-private hybrid model has not emerged. Academic librarians should take the lead and offer to host journals using open journal systems (OJS). For unprofitable journals, or those with small readerships, publishers should think about good corporate citizenship and help struggling society and university publishers to publish journals.

Now, let’s talk techno tools. The name of your blog, for instance, is The Search Principle blog and on Twitter you categorize yourself as a “bio-medical librarian, renegade, techno-enthusiast.” Let’s parse that a bit. Could you tell us a bit about yourself? What, for example, is a bio-medical librarian versus a plain old medical librarian? A renegade in what respect?

I am all three: a health librarian, a medical librarian and a biomedical librarian. I answer to all. I wrote that on Twitter and on my blog because I had to come up with something. I’m not too much of a renegade, but I admit I won’t tolerate inequities and I stand up for others who cannot stand up for themselves. Perhaps this is what I am trying to do in my profession: stand up for our field, for excellence and high standards.

And as to being a techno-enthusiast, what are your top five favorite Web or search tools and what should we look for techno-wise in the coming year for medical librarians and vis-à-vis Web users in healthcare generally?

Keep in mind that I have to answer your questions from my perspective as a Canadian. Finding as much Canadian content as I can – medical evidence, statistics and local consumer health information — is central in my work. The websites or search tools that I cannot do without are: 1) The BC Health Guide 2) Public Health Agency of Canada 3) Health Canada 4) The Cochrane Library and 5) Medline OR PubMed. I also think that WorldCat is important as are Bing and Google Scholar (and all three have Canadian content).

Do you regard Wolfram|Alpha as a flash in the pan or as something truly promising? What do you think of Rupert Murdoch’s pushback vis-à-vis Google? Dumb move on his part? Is Google the default and any moves to try to shift Web users to Bing doomed from the get-go?

Wolfram Alpha has a lot of promise, but it may in fact be a ‘flash in the pan.’ For laypeople, and non-scientists, it’s not easy to use. We want it to behave like our print tools like the Merck Index and the CRC Handbook to behave – with intelligence and intuition. The only problem is that searchers do not know how to extract the information from it or how to form answerable questions.

As to Murdoch and his rejection or challenge to Google, I think it’s fine. Google needs competition. The more players we have in search the better. I don’t think Bing is doomed and don’t think it will be easy to dethrone Google. Ten or eleven years ago, no one thought Yahoo could be unseated as the most important search tool. The whole area of web searching continues to get attention for the money – but it too will stop flowing if the tools do not produce usable results or become cumbersome to use.

Getting back to Twitter, what are your favorite tools in it, how has its advent changed your work practices, whom has it connected you with that you had not known of before and how do you see it being used effectively by librarians, clinical researchers and front-line clinicians? Can you give us specific real-world instances of its use in clinical settings?

We need a whole conference to discuss Twitter properly. I will say that it has evolved since it was first developed – because we, the users, have seen its potential applications. Twitter suits me (and my needs) on a number of different levels: first, I’m a snoop so Twitter satisfies my need to listen to other people and to access information and gossip in real-time. Second, I enjoy hearing about other people’s working lives, projects and thoughts on world events. Finally, I enjoy myself more when I have information sent to me. Danah Boyd speaks eloquently on her blog about how she was intimidated by backchannels while she spoke at a conference. But Twitter is useful to all kinds of clinical people; I hear some psychologists use it to remind patients to take their medication. For anyone who needs to send tweets in the future, you can use a range of clients to send your ‘network of contacts’ messages at selected intervals.

Whom do you regard as the best tweeters in medicine and librarianship? Any additions to your list here?

I will definitely be adding to this list in 2010. Stay tuned.

Do you see Twitter as eclipsing blogs per se or do you find that Twitter drives traffic to blogs? Do you foresee the RSS button on blogs and Web sites being replaced by Twitter buttons? Or is RSS the perfect tool for leveraging the power of Twitter? Who are your favorite bloggers?

All of the tools you mention such as blogs and RSS feeds are affected by other social media. But I don’t see any tool that you have mentioned being eclipsed or replaced. Blogs are central to our culture now. Twitter has changed some of our behaviours and writing less than 15 words or 140 characters; it too is part of our culture. I like Twitter because there is power in concision and regular posts to your network. All of this is a part of defining your influence in the spaces of web 2.0. But none of that will stop me from blogging which is integral in my work.

You provide here a very useful overview of social media tools and I was interested in this comment, “RSS feeds can potentially replace traditional email lists, reducing email overload.” Have you indeed noticed that some email lists are disappearing or are people simply using tools such as Feed My Inbox
to use RSS a way to create email alerts? Are RSS readers really gaining traction among the general public or are they passé as far as the masses are concerned and are they falling out of favor even with the info-minded cognoscenti?

The level of general interest in RSS feeds and aggregating tools like Bloglines and iGoogle has been disappointing. There are physicians and other health professionals who do not know what “RSS” means or why it might be useful. The dominant form of communication is still e-mail. I maintain accounts on a number of aggregators and have discovered new aggregators such as Netvibes and Ning. The latter is a tool that allows you to create your own network – and it is very easy to use. But its adoption in medicine is minimal.

Thank you for your time, Dean.

I work in the healthcare industry and one of my tasks is keeping up on developments in how clinical research is funded and conducted and its results disseminated. I have worked in a medical library, for instance, and medical librarians know about the Open Access movement. But they may not know about all of the vitality and software tool generation that is happening in the world of Open Science, activity which leads to the publication of what becomes the final product as far as medical librarians and their patrons (physicians, nurses, pharmacists) are concerned—a paragraph or two in a piece of medical literature.

I envision as the readers of this interview a wide range of people including medical librarians, medical students, undergraduates and graduate students in the sciences and engineering, technologists, healthcare industry analysts and anyone interested in what appears to be a revolution in scientific communication, a revolution that we can all welcome given that it promises to streamline many aspects of the scientific process and to facilitate communication between scientists to the ultimate benefit of everyone who will ever become ill or love someone who is. As you can see, you are a very important person in my book!

Here is how I came to hear of you. I began to write about search engines and then about Science 2.0 matters in 2008. I came to visit the Life Scientists room of FriendFeed.

Being new to the subject, I noted that I kept seeing certain names bandied about as the go-to experts on the subject of Open Science and noticed that certain people were cogent thinkers and superb writers and people who appeared to be made of nothing but stamina and brilliance, so ubiquitous was their presence and so obvious their influence among the scientists in that community. I kept seeing certain names (e.g., Jean-Claude Bradley, Michael Nielsen, Bora Zivkovic, Bill Hooker). And I kept seeing references to a certain Cameron, who seemed to be universally regarded as the man who would assess astutely to the benefit of all some significant development in the world of online science. I wondered who this Cameron was. I know much more now, having discovered your blog, Science in the Open,
your postings in FriendFeed and having viewed many of your slideshows.

Could you please tell us a bit of your background? What kind of scientist are you, for instance?

I started off in what was at the time fairly conventional metabolic biochemistry doing an undergraduate project looking at what food molecules platelets selected from plasma when given the choice. Then I moved more towards biophysics and biotechnology during my PhD, looking at ways to manipulate DNA to make what were then large libraries of variants of the gene specific protein, trying to figure out how to make protein copies of all of those genes and then select the one or two out the billions that did what we want. The theme since then has really been about developing new ways of applying physical techniques from physics and chemistry to looking at protein structure and function.

My current job at the Science and Technology Facilities Council in the UK is an interesting mix of developing new techniques, using these to tackle specific structural problems, and working with the scientists who come in to use our facilities to help them solve problems. I enjoy working with other people and this job gives me a good opportunity to do that and for that to be valued, something that is often missing in university settings.

Let’s talk terminology for a moment. I noticed that Open Science people tend not to use the term, Science 2.0. Do you think Science 2.0 is a valid term with staying power or do you prefer the terms Open Science and/or online science?

Both “Open Science” (I actually prefer “Open Research” as it is more inclusive) and “Science 2.0” are good rallying points and give a broad impression of an idea, or even a sense of a movement. I guess as a scientist, though, I find them lacking precision and I’m conscious of the ability of imprecision to lead to problems. Science 2.0, like Web 2.0, is a fairly vague term with more risks than most. Do we mean that it is version 2.0 – in which case we would be safer talking about being currently at 1.5? Is it purely about Web 2.0 tools, and is it therefore set up in opposition to Semantic Web, sometimes called Web 3.0 technologies, which I think are crucial to taking the agenda forward?

I guess, overall, I am comfortable with using Open Science/Research to refer to a movement of people who are essentially heading in the same direction. Science (or Research) 2.0 doesn’t for me capture a clear enough image to be helpful. I prefer “web native” or “using what we’ve learnt from the web for science.”

Please tell us about Open Notebook Science. Is it possible that there could arise related movements such as Open Engineering in engineering education? Are there any such programs?

Open Notebook Science is two things: a process and a commitment. The commitment is that you make your best effort to make the full record of your research available as you record it; i.e. as close as possible to as it happens. In a sense this is an ideal rather than something that is practically achievable. There are always variables that you don’t record, indeed don’t think to record, the “unknown unknowns” of research. But the point is that you do the best that is feasible with the resources you have – at a minimum making sure that the record that you use and make is the one that is available to the rest of the world. The process is how you go about making this happen. It involves some use of web-based tools to make your record and put it online, but a lot of it is just about raising the standards of your record keeping.

There is a growing movement across education to provide more of the underlying materials, lecture notes, videos etc. best demonstrated by the MIT Open Courseware initiative. These tend to be about making available materials that already exist. In the Maker and DIY communities there is a lot of interest in sharing designs and experiences of building objects and tools as well as much of the sense of playfulness that also characterizes the record of science and for me this makes a closer analogy.

Is there much interaction between the uber geeks of Open Source and the more basic science lab guys of Open Notebook Science?

Relatively little. It is also important to make a distinction between the Open Source and the Free Software communities that have different aims and philosophical attitudes. In as much as Open Source software makes it easier to be an open researcher through standards and code sharing there is a logical connection. There are also philosophical parallels – that the most effective way of working is to allow others to be involved. Logistical connections as well because the challenges involved in getting Open Source projects to work in practice are similar to the issues you start to face when people, skilled or unskilled, want to contribute (or in some cases wreck) a scientific project.

There are connections and people like Egon Willighagen are strong proponents of both approaches. John Wilbanks has recently written some nice pieces on where the analogy between Open Code and Open Research breaks down. In many ways we have more to learn from the people who look closely at developing best practice in code development. People who work hard on understanding how to document code, how to most effectively get it written and reviewed, and how to educate people to do both the writing, recording, and documentation well. Greg Wilson is a standout contributor in this area.

What led you to decide to take up a leading role as an advocate for Open Science? Was there some epiphanic moment? Or did you just come over a period of years to realize that there had to be a better way to do science given the rise of Web technologies and ever cheaper forms of computing?

Hah. Funny story, which I’ve written about. Basically it was all down to an irritating corporate firewall that lead me in a fit of pique to say we were just going to make our online notebooks completely available. I guess I was primed to think that way by the online reading I’d started to do but really my own ideas only developed after I suddenly thought “actually that’s a bit radical, I wonder if anyone else has thought of this…”. Of course they had and that led me into the writing of and Peter Murray-Rust amongst others that developed my own thinking.

Could you tell us how you go about doing the following, “I largely focus my research work on methodology development and enabling others. I can potentially have a bigger impact by building systems and capabilities that help others do their research than I can by doing that research myself…”

I figure when it comes to the science there are people who can do it better than I can. Where I seem to be able to make the biggest difference is in helping others to do their science. So at STFC we are working towards developing new approaches to look at the structure of “difficult” proteins – that we hope will be useful to others. On a more prosaic level we just build up our own expertise to try and make sure that when users come in we ensure that their experiment works properly and that they can get their data analysed and published (that’s the aim anyway).

Finally, by doing this we show examples of little things that people can do. Maybe they don’t want to put everything online in a public way straight away but giving a working example of an online notebook means that people see it can be done – see the advantages and disadvantages and might choose to do that for themselves. Similarly by talking about using collaborative literature filtering and online services like Citeulike, Mendeley, and Zotero, it gives people a push to using those services which makes them better for everyone. This makes it important that all of these pieces of process, of practice, are useful in their own right and that they don’t have to be combined together to work.

You have been working a lot on Google Wave, for instance. Could you discuss that? How does it play into your statement here, for example, “…we need to build tools that make it easy to take those unstructured or semi-structure records and mold them into a specific structured narrative as part of a reporting process that the researcher has to do anyway. Writing a report, writing a paper. These things need to be done anyway and if we could build tools so that the easiest way to write the report or paper is to bring elements of the original record together and push those onto the web in agreed formats through easy to use filters and aggregators then we will have taken an enormous leap forward.”

Wave is suffering through a very accelerated hype cycle at the moment. What got me excited about it in the first place was really two specific things; the ability to automate the collection and capture of information in an environment which can feel to the user similar to a simple text entry; and the use of history as a way of dealing with the problems of provenance, who did what and when. We haven’t seen much technical development of the latter yet, but there is a lot of promise there for the future. It has been the capture of information that I’ve been mainly working on.

The idea is that you encourage them to put in a little effort, tagging or marking up their record, because they get a big return for it; ease of marking up next time, a complete searchable index of their work for free. This doesn’t have to be built in Wave; you can imagine doing something in Word, Excel, Open Office, Google Docs, Wikis, whatever. The difference for me is that Wave for the first time made it feasible for me to directly start building things that could be useful for other users. And that was what really excited me.

One of the things that struck me as I viewed Jean-Claude Bradley’s fascinating slideshow, “Leveraging Transparency and Crowdsourcing in Chemistry Using Open Notebook Science” is that the process delineated in it seemed to both facilitate the process of scientific discovery and perhaps at times to impede it given the many tools (wikis, Google Spreadsheets, YouTube, Second Life, etc.) that scientists now have to keep track of. Could you discuss some of your favorite tools and what tools are under development that could leverage the particular advantages of each? Is there some mega-platform under development that would address certain problems and what are those problems? Is Google Wave the answer? Is an answer really possible given that some tools are Open Source and some commercial?

It’s a real problem in two ways, first that with lots of different packages you inevitably hit cases where you can’t get information out of one and easily into another. This is why data portability and standards for import and export are so important. It’s a bit dull but in some ways data portability is more important than getting the data out – but we need critical mass of data to get the tools built and around we go in circles. I personally have no problem with a mixture of commercial and Open Source tools, I use what is most helpful to me at the time. But data portability is crucial – What Open Source gives me is some sort of guarantee that I can get my data back out again.

My hope is that Wave or something like it, some sort of aggregated inbox that can talk to all of these systems, or rather many of these that work in different ways to serve different people’s needs, will arrive and help us solve the problem. Sometimes it feels like we are at the stage of rubbing sticks together and hoping something will happen though.

You met a few months ago with Elsevier. Now, to many who are passionate about Open Access and of the school of Information Wants to be Free, Elsevier is the bloated, multinational, science-impeding devil incarnate. And yet here it was talking to you, Mr. Open Science. That was intriguing and a credit to Elsevier. Could you please tell us how and why they approached you and what your interactions were?

I was invited to what they called an “Ideation Workshop.. Essentially they got a group of internal people together from different groups, sales, IT, journals, many of whom had never met to talk about the long term strategy for their web services. I won’t talk about the details of what was discussed because I didn’t ask for permission to do so but in general terms they were engaged, interested, and looking at how to contribute to the long term future of both scholarly communication and its management, and the commercial health of the company.

What I said to them was essentially that they needed to ask themselves who their customers really were and where the opportunities to have viable long terms business models are. I started with the assumption that there will be a move towards more Open Access publication, driven by funders, and that there were simultaneously big commercial opportunities to be found in providing new types of services to research institutions, funders, and government. And that these opportunities depend on them getting Open Access to the literature…

Did you, for example, discuss with them their Article of the Future project and do you agree with John Wilbanks that there is very little that is transformative at all in the project?

Actually we didn’t talk about the “Article of the Future” – I’m not absolutely sure whether it was even out at that point. However, I do share John’s assessment. I think I was a bit more brutal at the time. Essentially all I saw was the article of the past…but on a web page. There were some nice presentational aspects and I liked the way “supplementary” information was promoted to having a place in the paper but my over-riding response was that what they’d done should have been trivial if the information was organized properly in the first place. If it wasn’t trivial there were more important problems to solve than presentational ones.

And speaking of the article of the future, do you think that perhaps the scholarly article in a way has no future or that it will become in only a few years time a perfunctory afterthought for a young scientist instead of the crucial career-making measure of accomplishment that it still is?

I think the role of the journal article in making a claim, or expressing an idea in human-readable form will remain important. But as the literature grows we need more effective ways to manage it, and we have to ask ourselves as a community whether we can afford it. More often than not when I read a paper I am looking for a single number, a link to a data file, or a single statement. My personal view is that we could lose maybe 90% of all published papers and simply put the data up with some methodological description on line. This would save billions, money that could then be spent on research.

The problem with this thinking is that these different costs are rarely tensioned together. No researcher ever has to make the choice of “do I spend $50k on a Nature paper or do I employ the postdoc for another year?” If people were having to make that choice on a regular basis I think pre-print archives would flourish.

After all, in the world that you and Jean-Claude Bradley seems to be actually creating, publication as we now know it is almost irrelevant given that much that is of interest in the sciences is now becoming available in many venues such as preprint sites like Nature Precedings.

For me the question is really about we do this in the most cost-effective manner while making sure the outputs of research are as available as possible. This means we need different types of “publication” for different types of output and different types of peer review at different stages. Again, until we are tensioning all the costs of research against each other I don’t really see this happening, and we will continue to pour taxpayers money down the drain.

Could the rise of Open Science actually benefit the mainstream publishers in that as processes and communications become ever more efficient and scientific networks expand, thereby pooling resources, the publishers may reap the benefit of ever greater amounts of science to publish? Or will they have to contend with the fact that the coming generation of researchers will become so used to such seamless science-making that they will scoff at the idea that they need to publish in a journal that only the richest of research libraries can afford? How do you see Open Science affecting the career paths, say, of young biochemists or neuroscientists? Are there some fields that are simply not suited to the world of Open Science such as many of those in the health sciences?

There are massive commercial opportunities in providing repositories and platforms to enable the publication and archival of research in its widest sense. Someone is going to make a killing on this by having the right platform to deliver what researchers and their funders need, when they realize they need it, and conventional publishers have a lot of expertise in building the tools and frameworks, and managing the infrastructure that can support these kinds of services.

I think there may be communities that are not suited to Open Science. I think we need to ask difficult questions about privacy and the rights of test subjects. But issues of privacy are much bigger than just those around Science; perhaps they are the major social issue we need to face up to in the Western World over the next decade. So there are special cases where data cannot be made open and probably should not be made open, but they are special cases, and not the default.

Could you please compare and contrast the attitudes and successes of Elsevier, Springer and Nature Publishing Group vis-à-vis adapting to the pressure from researchers and even now the general public for greater employment of the principles of Open Access?

At a corporate level I don’t think any of these organizations are adapting or making opportunities for themselves. I think they are responding and trying to manage those changing expectations without undergoing radical change that would be required to respond positively. That said, within all of these organizations there are people who understand the promise and opportunity of OA, but large organizations change slowly. BMC seems to be doing well inside of Springer, but it remains to be shown that this is more than a side experiment for the parent company. NPG are probably the most productively engaged with the whole agenda of improving scholarly communication but even there, they will only accede to non-commercial licences for their so-called OA offering. A case of offering just enough to keep the crowd happy rather than taking the opportunity of stealing a march on the competition.

You say, “The journal used to play an important role in publication. The publisher still has an important role but we need to step outside the notion of the journal and present different types of content and objects in the best way for that set of objects.” Will it become the case that scientists could simply start purchasing what we might call nano-content? To wit, just the conclusion of a full article or a single graph or chart from one? Do you see the publishers going for such a model on the premise that some revenue out of an article is better than none or will they balk at the idea of making peanuts on piecemeal distribution of bits and pieces of what they can, as things stand now, potentially sell for a hefty sum as a whole, intact object?

There is an alternative to the OA model, and that is the micro-payments model in which the researcher has their own budget and pays small amounts for what they need. An iTunes for science if you like. But by analogy with the music industry if this was the way forward then you can imagine peer to peer sharing of purchased content being very popular. And DRM for science is bad news. It’s bad news anyway but the whole point of getting research content is so you can build on it. Making that difficult would defeat the purpose of the exercise.

Now I am going to put you on the spot and ask you to help readers gain a grasp of who is who in Open Science and what the particular strengths of and accomplishments of each are.

Let’s start with John Wilbanks. Could you please delineate for us the relationship of Science Commons to Open Science? Wilbanks seems to an interesting bridging figure between the world of Open Science, Open Access, the whole world of the idea of an information commons, big data and Web 2.0. Do you interact with him much and where do your interests and views intersect and diverge?

John is the figure who perhaps more than anyone else has driven forward the discussion and ideas around the high level of issues of policy and practice as well as actively pushing forward with specific projects. The success of Science Commons is getting exemplar projects moving forward, such as the SAGE project, is largely due to John’s boundless energy and enthusiasm. Mostly we intersect when we happen to be at the same meeting. I’m in strong agreement with John about most things. Perhaps we were diverge somewhat is that he is a stronger proponent of “core” semantic web approaches whereas I would characterize myself more as feeling that we will be able to work with a more flexible range of technologies. But it’s a very minor difference.

Michael Nielsen. Is he more of a theorist and explicator and less of a hands-on scientist than you and Jean-Claude Bradley?

Michael definitely comes from a theoretical background which brings another perspective. It isn’t clear to me for instance that the idea of an Open Notebook evens makes sense for a theoretician. I don’t really have a clear enough idea of how they work on a day to day basis. At the same time Michael is far and away the most conventionally successful scientist who is an active proponent of Open Notebook style approaches. The fact that he has largely moved away from active research to focus on trying to change the practice of science sends a very strong message. I sometimes wish I had the courage to follow that example.

Jean-Claude Bradley. How do you two resemble one another? I would say that you blog more extensively in the scientific essay mode a la Michael Nielsen and that Bradley tends to be a bit more utilitarian in his approach. Am I close here?

Jean-Claude is the real originator and driving force behind the Open Notebook movement. I guess we are similar in our approximate career stages and we have some cross over in terms of research interests. Jean-Claude takes a much more direct and immediate approach to his work, using tools and services that are available and taking a very strong approach to requiring that those are freely available. He also seem to have a lot more energy than I do!

I think if you were to characterize the difference between us it would be the Jean-Claude is much more focused on outcomes and immediate returns whereas I am more interested in process. This means that he gets on and uses what is available to make things happen. I tend to be more interested in (and get more frustrated about) building tools for further down the line. We have some slight philosophical differences in that I think I am more gung-ho about favouring policy changes that push researchers harder in the open direction but these are shaded differences of emphasis rather than big differences.

Bora Zivkovic

Bora is the uber-science blogger. He is one of the longest serving science bloggers with the biggest following. He has been a long term ideological supporter of Open Access and open movements. I think he has a much more political and policy orientation than most of the rest of us do.

Rich Apodaca

Rich I know mostly through his writing on Depth-First and the development of various tools, most recently ChemPedia and its associated Stack Overflow-based site ChemPedia Labs. Mostly my interactions with Rich involve one of his tightly written blog posts that crystallize an idea, often around practice or scholarly publication. Two posts that stand out for me was one on the Seven Deadly Sins of scientific publication (practice?) and things he wrote about micropublication.

Bill Hooker

When I first started reading stuff online Bill was one of the very early people I came across (along with Jean-Claude, Deepak, and Neil Saunders). His three part series on 3 Quarks Daily was a very strong early influence on my thinking. He is one of the most active and vociferous advocates of open practice around. I once jokingly characterized him as “Bradley’s Bulldog.. Probably more than anyone else Bill has taken the fight to the online trenches, arguing the case in forums and blogs.

Antony Williams of ChemSpider

Antony again is one of these people with apparently boundless energy who just keeps getting on and doing things. He spent years pushing his personal vision of an online resource for chemists forward with little or no funding spending vast amounts of time on it. Now that Chemspider has been purchased by the Royal Society of Chemistry and he has more resource and stability you might think he would take a rest and sit back a bit but he seems to be pushing forward and in the air travelling even more than he was before.

Antony is a do-er. Again a bit like Jean-Claude he will take what is available and make things happen. He is less interested in the technical and sometimes ideological issues that rage around licences, databases, and information structures and more focused on building an end product that people can use. This can and does lead him into conflict sometimes with people that are more worried about other aspects of the problem, but we need that diversity of approaches and services if we want jam today as well as tomorrow. Bottom line, Tony makes stuff happen.

Deepak Singh

Deepak again was one of the people online that I came across very early and had a strong influence on my thinking, particularly on tools, technical issues, and systems design. Also simply in the way he presents himself online. He has one of the most effective and coherent online personas I’ve come across. His experience and approach is more commercially oriented than mine so pay very close attention when he writes and speaks about issues around intellectual property and commercial practice.

We probably differ in our stance around patent law and intellectual property, not because we fundamentally disagree about any principles, we both want to see the most effective conversion of research into valuable innovation, but because of our background and experiences.

Andrew Lang

Andy I first came across as Hiro Sheridan in Second Life and it took me a while to make the connection. He has been really instrumental in creating a lot of the imagery that has supported a range of projects. He is a dab hand at pulling together rapid and lightweight visualizations of data using a wide range of tools. Again there is a focus on making stuff happen. His background in maths and computing has made it possible to turn a lot of things around very fast. Particularly in combination with Rajarshi Guha who did a lot of the development of chemoinformatics services that support every aspect of the Open Notebook Solubility Project he is one of the team that have turned perhaps rather dry lists of numbers into compelling visualizations.

and the up and comer Steve Koch

Koch has been a real breath of fresh air and has brought new energy into the whole community. As a new tenure track academic he is really putting everything on the line and pushing the envelope on Open Notebook Approaches. I have thought for a while that ONS approaches would be most risky for new academics and that therefore they would be unlikely to take this approach. I am delighted that he is proving me wrong on a daily basis.

I should also mention that he has a young and extremely energetic research group that are really backing him up and are also gung-ho on Open Science. Anthony Salvagno, Andy Maloney, Larry Herskowitz, Brian Josey and the others are all energetic, positive, and getting out there to make more of their science available.

and Shirley Wu who, given her job at 23andMe , is a fascinating example of how the coming cohort of scientists and technologists interested in Open Science are becoming figures of note in related areas such as Health 2.0 and in the commercial sector.

Shirley first got in touch with me via my blog when she was a PhD student in Russ Altmann’s lab at Stanford, with the suggestion of running an Open Science session at the Pacific Symposium on Biocomputing. She did most of the running on this, writing up the report, being far more successful than me at getting sponsorship and generally pulling everything together to make it happen.

She has been both a great thinker and articulator of ideas on her blog and although her writing has been more focused recently on writing on the Spittoon at 23andMe on specific genetic issues I think she has a great future writing more generally about science and how it is carried out. I certainly hope that she continues to write about her ideas and opinions in that area.

Have I missed any major figures?

Other people I should mention as both major players and influences are Peter Murray-Rust, who is one of the most sustained and energetic fighters for Open Access and Open Research around. He has been a bit less active in the blogosphere recently because of the large number of big projects he is involved in. In his group at Cambridge both Jim Downing and Nico Adams have been pushing on the tools front for a long time.

In terms of influence there are far too many people to mention. I often think I have no ideas of my own, I merely synthesize the ideas of others. So all the past and current people on Friendfeed, Twitter, and online more generally make a big difference, sometimes in small pieces and sometimes in larger ones.

Could you comment on the role that search might play in Open Science? For instance, does Wolfram|Alpha hold any particular interest for you or do you think it was much overhyped?

Search is crucial for the success of Open Science. As we put more stuff online it has to be possible to find it. This means developments in semantic search, as well as improved computational engines like Wolfram Alpha. WA is an impressive piece of technology but from my perspective it has a fatal flaw. It only works on the curated information that is in their database. This has two problems – a lot of the chemistry in their is simply wrong or badly misleading. Various of us have reported problems, but I’ve seen little progress on this. But fundamentally if we don’t know what the root data is or its source then it is of little use to the wider research community where provenance is everything.

The second problem is related but slightly different. Because it is a curated database there is absolutely no way it can keep up with what we are generating. Now if WA could work over my data then I would be interested in formatting it in the correct way. But since it can’t there is little point. Until WA can be connected to a data aggregator that spiders the web I think it will be a useful tool for a few things but mainly a toy. If it can use the whole web as a database then things become very very interesting.

Where are we on the purchase of FriendFeed by FaceBook? Many of the members of FriendFeed (including yourself) seemed concerned that much of the accumulated knowledge in the science-focused rooms therein would be lost to the community. What do you see as the future of FriendFeed under FaceBook?

I can’t see that FriendFeed has a long term future in its current form as essentially the ex-project of the FaceBook development team. We are already seeing things take a long time to fix or problems (like the broken search) just not being fixed. I think we’re on the long slide down to oblivion. The question is, how long?

There are a lot of good ideas out there. I’m not worried about whether we could build something if we needed to. What I am worried about is how we could fund that work.

Speaking of FaceBook, do you have any comment on the supposed showdown over the future of the Internet vis-à-vis the more gated community orientation of FaceBook versus the freer orientation of Google? Bets on who will win or is such a duel genuinely in the offing? Implications for Open Science?

Apparently there is a whole generation who think FaceBook is the internet. I think in the end open wins out, the bigger system, with greater diversity and greater ability to create new systems wins. That’s true when there is real diversity and competition. A good question is whether it remains true when one system captures the majority of the market. Internet Explorer is losing market share even though it had enormous penetration. But equally Chrome is struggling somewhat even with the might of Google behind it. And if Google aren’t supporting Mozilla then can Firefox survive?

I want to believe that open always wins in the end. Sometimes I fear that my conclusions are being driven by my wishes rather than the evidence, though.

You use Twitter, but you don’t seem to have written much about it. Do you see it as having much of a role to play in Open Science? Jean-Claude Bradley does not seem to have mentioned it as one of the many tools employed by the scientists engaged in the project he discusses in the slideshow mentioned above, “Leveraging Transparency and Crowdsourcing in Chemistry Using Open Notebook Science.” Whom do you regard as must-follows on Twitter? What Twitter tools do you use?

I use Twitter largely as a way of tracking a somewhat different community of people to that I find on Friendfeed. I don’t get much “real science” out of Twitter. It is more about staying in contact with the IT and UK information management communities. I think in most cases the tool is close to irrelevant; it’s the community that matters. To the extent that the tool matters it is because of the way it supports the formation and management of the communities relevant to you, not the functionality itself.

In terms of information gathering the person I get the most from on Twitter is Glyn Moody, but to be honest I could cope if it closed tomorrow. I use Twhirl to follow on my laptop and Seesmic on my phone.

On a related note, what do you see as the future of RSS?

RSS, or rather feeds in general are key to the future of information management in my view. ATOM is more powerful and flexible but doesn’t need to worry the user too much, ATOMPub is a great protocol for pushing information as well. Feeds can go in both directions. Going forward we will also see more real time “feeds” using push protocols like XMPP. But at the bottom my entire world view is about manipulating feeds of information and objects: controlling which ones come to me and deciding how to deal with them and pushing out other feeds of content I’ve touched, used, or created.

Where are we with the matter of Open Science logos and how crucial do you think that matter is?

Clarity is really important when you are saying what you intend to do and how to do it and in that sense I think logos are really useful. They also, by the use of trademarks, let you define standards and aggregate communities around statements of purpose or ideals. The great success of Creative Commons is that they’ve created both a community and a clear statement that is wrapped up in a couple of logos that (to some extent at least) have clear understood intentions. If we can achieve this for Open Notebook Science then I think that would be a great thing.

Which brings us to the question of why I haven’t used them I guess…Simple answer is that I don’t have access to the style sheets that drive my lab notebook. This is a surprisingly general problem – and also applies to licences. I want to put up some data, so I do it on some service, but that service doesn’t let me put a ccZero licence (e.g. FeedBurner doesn’t have the ability to apply ccZero to your feed although you can use CC-BY). If I don’t have the ability to add it how can I express my wishes? However, that excuse is running a little thin because I’ve learnt enough about stylesheets that I could probably do it now…

How do Tim Berners-Lee’s ideas about the Semantic Web fit into Open Science? Do you take issue with any of his pronouncements and positions?

I absolutely believe in the Semantic Web and Linked Open Data as the way to move forward for describing the outputs of research in the lab. I guess I have two slight differences with TBL. Firstly I am not sure that an exclusive focus on RDF is the best way forward because there is some mileage in other formats that are widely used. They are not as good in the longer term, but they might make a good stepping stone for many cases and we need to solve the problem of transferring lots of legacy data as well.

Where I have a different emphasis to many SemWeb people is that I think our biggest problem is providing tools that capture information and build the links. Generating linked data seems to largely involve a lot of typing of angle brackets or mastering complex software libraries. This is nonsense if we’re going to produce large quantities of linked data. We need tools that help the average user, the average scientist generate and publish data in this form without them having to worry about the details. If it’s further away than a right click then it isn’t going to happen.

If you were to win a MacArthur fellowship, how would you spend the money?

I have to say I’m not actually sure exactly what you get for a MacArthur fellowship but I was thinking about putting in for an ERC Senior Fellowship so let me describe what I was thinking about for that.

Third, get right into the social sciences and look hard at what is happening around us. Really look hard at the different online tools, figure out what is working and what is not, and try to understand why. Look for historical parallels that will help to predict the best way forward. Get a real understanding of the social sciences that can help me to understand developments and push them in the right direction. Get real evidence of what open practices are achieving, and where they work best. Find the low hanging fruit and apply resources where they are most likely to find the big wins.

What is your goal for the next year? The next five?

This year it is to make sure I get you these answers before the year is up! Seriously this year my goals are the same as last year, to make more space and time and find the resources to do some of the things above somehow. Over five years, really the same. I would like to have made a significant impact, for the better, on the way scientists work over that period.

Who are you heroes in science, technology and in any other field on endeavor?

The people who make a difference. I’m not sure I really do have heroes per se. I admire people who think clearly, and who influence my thinking in positive ways but that’s a little circular. As a scientist I guess I am a little uncomfortable with the idea of placing too much of an aura around the person rather than the work. To the extent that I have heroes many of them are the people mentioned above. The ones who have motivated me, through their ideas or their example, to try and make a difference where I can.

You and I both recently attended ScienceOnline2010. Do you consider that a must-attend event for those interested in Open Science? Can you tell us a bit about how you think your own sessions went, which presentations you found most compelling, whom you got a chance to chat with there that you already knew and what new people you met there that interested and impressed you?

I was very happy with the Open Notebook session that I was involved with and less happy with the Wave demo. In retrospect I probably should have shown the canned video demo that I had rather than try and do it live, which is a lesson I will take to other demos. I was really disappointed that I missed sessions by Andy Farke, Pavel Szczesny, Jon Eisen and many others. There was just far too much good stuff going on. I think Science Online is growing into a must-attend event for those interested in how scientific communication is evolving in its widest sense.

For me, I guess I came away with a couple of key ideas about how to distribute data in new ways and a greater appreciation of the challenges of curation in the longer term. But also the potential for connecting things together – a lot of this seems nearly in reach if we could just figure out how to bridge a few more gaps.

Also, some of the librarians at ScienceOnline2010 came away with the impression that some scientists regard libraries as we know them to be increasingly irrelevant. Do you have any suggestions as to how librarians can play a role in Open Science?

The role of “the library” in the 21st century is a source of angst for many people. The broader question really is how do we want to manage information in academia in the future, and what spaces, real or virtual, need to be provided for people to interact with information. A lot of this is virgin territory, so there are massive opportunities for the people and communities who want to get out there and make things happen. Equally, a lot of it is unfamiliar territory for librarians and other information managers. Life is like that.

The other important role is to take a much stronger advocacy role in explaining the true costs of current subscription systems. A central problem with our current structure is that academics are blinded to the costs of their publishing decisions. I think librarians need to be radicalized to take on their own academic staff and make them see and feel the costs of their decisions. I can see that this is both dangerous and scary and also a departure from the traditionally subservient role of library decision making to academic need. But if the current fear is a lack of relevance, then maybe some pain is required to make it clear what the relevance is?

What conferences do you recommend those interested in Open Science attend and where do you plan to appear in coming months? I am looking forward to hearing you speak at the Science Commons Symposium – Pacific Northwest February 20, 2010, for instance.

That’s a hard question – Open Science seems to exist on the periphery of mainstream conferences and at the same time to a certain extent in a ghetto of its own. The Science Commons Symposium will be great – and I’m really excited to be there. The Science Online London and Science Online 2011 meetings will be important marking points to look at progress. The SAGE Congress in April in San Francisco will be an exciting place to talk about what is possible today and into the future. But the place to really progress the discussion about Open Science is in the mainstream – by standing up in a conference and giving a talk…and providing a link to the data. By making the underlying code and analysis available and saying so in the paper. By simply raising the bar for what we expect from the communication of good science. Ask the questions – demand the answers and live it out with your own communication to the best of your ability and change Open Science from an activity practiced by fringe lunatics into nothing more than the good practice that we expect.

Thank you for your time, Cameron.

I came to learn of you as I have been trying, as the saying goes, to “wrap my head around” the concepts of Open Science, Open Notebook Science and what seems to be a genuine revolution in scientific communication and the dissemination of scientific information. I have come in the past year or so to learn that there is a core group of people in the vanguard of this movement including Jean-Claude Bradley, Cameron Neylon, Andrew Lang, Michael Nielsen and you.

Open Science seems to me to be a genuinely transformative movement in not only science but in the information sciences and should be of interest to anyone with an interest in scientific research, scientific publishing, academia, scholarly communication, search engines, the relationship of new technologies to mainstream scientific societies, technological innovation, the Semantic Web, big data, social networking in the sciences, new tools for scientific and scholarly collaboration and so on. And throw in the fact that you have managed to create something important with very little (if any) grant funding that caught the attention of and was acquired by the prestigious Royal Society of Chemistry.

We actually did it without any grant funding. ChemSpider was originally started as a hobby project so looking for grant-funding to fund a hobby project per se wouldn’t have been a good basis for any agency to contribute. Can you imagine that exchange with the NSF… “It’s something we’re interested in doing for the benefit of the community so would you mind kicking in a few dollars to cover the costs at least?” A discussion destined for failure. Even much later when we were listed on grant applications with collaborators we unfortunately didn’t get any funding. We did, however, have a number of companies step forward and sponsor the site because we were doing something of value for them, especially when we provided access to the data via a series of web services. Specifically Waters, Thermo, Agilent and Bruker all contributed and we thank them for that. It helped pay for the hardware!

Thus, we have in you we have the story of a basic scientist who also succeeded as a Web entrepreneur on the strength of a way cool tool and the respect you garnered as a scientist and innovator.

Thanks for the kudos. While I am a scientist I think my role over the past decade has been “Idea Guy” and “Connector,” connector being the Malcolm Gladwell sense of the word (The Tipping Point). I know a lot of very able people who are willing to move from the talking stage of doing something to actually getting it done. I’m very opinionated regarding when there is enough talking and thinking about doing something and it’s time to get things done. As I like to say “Try to feed the dog and the dog dies. If you ACTUALLY feed the dog he’ll be fine….but if you only TRY he won’t be.” Over the years I’ve developed a fairly good batting average in terms of starting a project, iterating, revisiting progress, stopping if necessary and redirecting as necessary. It’s my preferred way of working. It’s much easier to run a project this way outside of a structured organization, of course.

I envision as readers of this article all those who are, like me, trying to get a grasp of who’s who in Open Science, anyone who cares about the future of science (and that really should include every human being given the importance science plays a role in practically every breath we take, how long we live and like matters), plus medical, scientific and academic librarians, science educators at all levels, information scientists, computer science students with start-up stars in their eyes, those who love chemistry, those who need to keep up on key developments in the world of search and those who want to gain a better understanding of rather arcane terms such as “the Semantic Web.”

I agree with you…Science touches us all. I was listening today to President Obama commenting about how the USA is lagging behind on math and science skills. I have to agree. I’m British by birth and didn’t get to the states until I was in my early 20s but I’ve been here almost a quarter of a century now and I have sensed a change in the interest in science. We do amazing science in this country, just incredible. I get to meet a lot of kids but I can’t think of one who thinks its “cool and interesting” that I am scientist. Maybe it’s because I don’t mix chemicals anymore and don’t make “stuff.” Science isn’t exposed to the public the way it used to be in my opinion. I think there are a lot of people trying to interest students and making sincere efforts, but I am hoping that the new administration will shine more of a spotlight on the issue of lagging math and science skills and DO something to change it.

One of the pleasures of conducting interviews with brilliant people who create pathbreaking tools is that I get the opportunity to grill them on matters of terminology.

In that tradition, I would like to ask you first to give us a very simple explanation of what ChemSpider is and why non-chemists should know about it. For example, I work in the biomedical sciences and for my own interest follow research developments in the disease amyotrophic lateral sclerosis. Much of the work on that disease involves the testing of various chemicals on mouse models to see if they have any effect on preventing or curing the disease or slowing its development. Now, I would think that tools that greatly expedite the work of chemists at a very basic level would benefit clinical researchers down the road. Could you please outline for us why average people who are ill or love people who are should care about ChemSpider and the wider world of Open Science? Does chemistry really matter to those of us who aren’t chemists?

I’ll break this into pieces to answer your questions. Firstly, what is ChemSpider? At present it is primarily a large database of chemicals and related data linked out to the original sources of the data. What we’re been working towards is having ChemSpider be a “structure-centric” resource. If you want to find information associated with a chemical structure/compound and you know either its name(s) or its chemical structure then you can search the database and find associated information and data. The data are of various forms and include lists of chemical identifiers, experimental and predicted properties, analytical data, textual descriptions including synthesis procedures and Wikipedia articles, links to related information and data sources.

In terms of “Does chemistry really matter to those of us who aren’t chemists?” that parallels questions such as “Should we care about Mathematics? Who cares about art or literature?”. While there are of course many issues and side effects of chemistry that have been detrimental to the health of the planet “chemists and chemistry” will be at the forefront of healing the harm we have done. Whether the public are conscious of it or not chemistry continues to bring benefits to society in so many ways in the form of drugs, novel materials for a myriad of applications, for green applications such as battery technologies, biodegradable polymers, safer pesticides, fertilizers and so on. These examples are ones that the public would easily recognize. Chemistry is everywhere and it should matter to all of us.

Now let’s move along to questions of terminology. As I have read around on the Web in preparation for this interview, I have seen ChemSpider characterized in various ways. Could you please define for us the terms I have come across in articles about ChemSpider?

Structure Centric Community
Chemical compounds encompass a broad distribution. There are those that have been fully characterized and defined and can be represented in terms of a chemical structure diagram and in our specific case in the form of a “connection table” of atoms and bonds. There are then those chemicals that are materials with specific compositions, for example minerals, or a distributed composition, for example polymers with a distribution of molecular weights and end groups. ChemSpider presently is limited to dealing with “structures” that can be represented with a connection table. The community aspect is twofold: ChemSpider as a resource is provided for the benefit of the community but we also intend for the community to participate in the enhancement of the data quality and content.

Database
ChemSpider sits of a database of diverse data associated with millions of chemical structures. The database itself is Microsoft SQL Server and what we have done is built a data model onto SQL server and populated the database with chemistry-related content.

As you can see, I am trying to figure out when something is a database and when it is a search engine. I work very happily on ScanGrants, but I still can’t figure out if it is a database or a search engine. We just use the wording, “a public service listing of grants and other funding types.” Could you please delineate for us the differences between a search engine and a database and is ChemSpider both depending on what operation the user is engaged in within it? Could you please give examples of what you would consider a database and what you would consider a search engine?

Interesting question. I think of a database as two things – the technology itself that hosts the content (in our case the database in SQL server) and then the data model and the data populated against the data model. Clearly SQL Server itself is unlikely to be of interest to chemists unless it is holding data of interest to them. A search engine is the manner by which people discover content and relationships that is generally, but not always housed within a database. The utility of ChemSpider is not just limited to searching a database as the platform provides access to a number of tools for the user that still have high value and do not involve performing searches or tapping into the existing data content. For example, we have a services page where a user can draw their own structure (or upload it) and predict a series of physicochemical properties for their structure. This does not depend on the structure being in the database as they are real time predictions and not data look-ups.
Examples of various databases would be eBay, Amazon and Wikipedia – they are all sitting on underlying database technologies and the user is interested in the content within. Clearly they all need to be searchable to retrieve information of interest to the user but they are not search engines per se. To me search engines are the classical internet search engines: Google, Bing and I extend it to include Mapquest/Google Earth.

In your very edifying slideshow, “How Internet Resources Are Providing a Collaborative Community for Chemistry” you have an intriguing slide entitled, “Crowd-sourcing chemistry curation.” Could you please talk about crowd-sourcing in chemistry and tell us if there is something unique to chemistry that makes it particularly suitable to crowd-sourcing or are you with ChemSpider and with your colleagues such as Jean-Claude Bradley creating models of collaboration that could be adopted by other branches of science? It does seem to me that Open Science at this point is of interest primarily to chemists and physicists. Will that always be the case or is there activity in fields such as neuroscience and medicine?

In terms of crowd-sourcing in chemistry our hope is that we can garner the support of the community to populate ChemSpider with their own content so that others can benefit from their skills and interests, the so-called “wisdom of the crowd.” However, since there is already so much data and information on ChemSpider we are also hoping that the community will help us validate and curate the data that is on ChemSpider. With over 20 million chemical entities on the database, many associated with dozens of names and properties, it is not difficult to find a simple misspelling, a property without units or a mis-associated spectrum. This amounts to millions of potential errors that cannot be validated algorithmically or robotically and human eyeballs and skills need to be brought to bear.

Jean-Claude Bradley, JC, is at the forefront of Open Notebook Science and is instigating projects that harness the collective skills of students to measure, publish and collectively validate experimental data. In particular this has been brought to bear recently in his Open Solubility Project where a number of individuals are measuring non-aqueous solubility experimental data and sharing the details and results of their measurements via a wiki. The data are then aggregated and served up the community to reuse and repurpose. Since all experimental data are available via links to the original measurement data, true Open Notebook Science, then erroneous results can be questioned, discussed by the community and highlighted for re-measurement or investigation. JC’s work in this particular area is unique but Open Science has been going on for many years in astronomy where large teams openly share datasets and collaborate. If you consider biology this is already going on through the sharing of massive amounts of biological assay screening data through the PubChem platform. In this way certain labs are screening particular compounds and making the data available and other laboratories are accessing the data and using it to investigate potential lead compounds. The same is true of the Toxcast work funded by the environmental protection agency (EPA) where there screening data are being made available to modelers to investigate algorithm development for example. Open Science is all around us today and only continues to grow in parallel with other areas of openness – Open Source and Open Access.

In that same slideshow, you use the rather intriguing term “lost chemistry.” Please elaborate on that.

I originally heard the term “Lost Chemistry” from a gentleman called Dick Wife. Dick has been running a project for a few years to aggregate from chemistry theses synthetic reaction procedures to build a large database of chemical syntheses. For every published chemical reaction there are many more syntheses reporting the experimental conditions, yields and analytical data that never make it outside of the originating laboratory but can be captured into a thesis. Dick has been heading a project called SORD to aggregate these data into a single database and make it available to the community. If you wish to have free access to the resource then you need to be a participating lab and share your data so that it can be populated into SORD. If you wish to access the data but not be an active contributor then you need to pay to access. This helps capture a lot of “Lost Chemistry.” As an NMR spectroscopist I have the same view of the number of spectra measured in a year around the world that never get reported and simply remain confined to hard drives inside an organization. We hope that people will take advantage of the ChemSpider platform to share their data and help prevent the “loss” of chemistry. Imagine how many experiments have been run in labs around the world where the data/description/conclusions are lost in notebooks on a shelf. I am not talking about long-lost information but data generated in the past couple of years where computer capture and data management capabilities could have helped expose the information. This will change. What we need to catalyze the shift is a couple of prominent thought-leaders in our domain to lead the way.

Again in that slideshow, you state, “ChemSpider accepts public depositions, linking to websites, hosting of details etc. Accepts structures, text, spectra, images.” Could you please give examples of each and discuss the challenges of quality control? How do you handle matters of link rot, for example? How has the acquisition of ChemSpider by the RSC helped you in such matters?

I think I’ve outlined earlier the concept of depositing information onto ChemSpider. We do have people submitting their own chemicals to the database now, regular associations of chemicals with publications, association of spectra etc. We have over 2500 spectra at this point. Quality control is rather simple but is hard work for a number of curators. We have different levels of curators and master curators check the curation efforts of members of the community who are depositing and validating data. Spectra are generally checked within a few hours of being deposited, images are generally checked within a few minutes, chemical names are re-checked within a day etc. Simple comments submitted against chemical records are available for everyone to see and the thousands of historical comments made are all viewable. Bottom line, we recheck everything. We have only had a couple of acts of vandalism and it amounted to people posting funny images (for example, the Katie Crowe incident or the Exploding Mouse). I’d estimate well over 95% of the edits and depositions are correct associations. I would say that 99% of the comments raise appropriate awareness to us regarding issues on a particular record. Overall, this is very impressive.

Link rot is an issue but we try to minimize it. For example, we link as many publications as possible via PubMed ID or, preferably, digital object identifier (DOI) and then use those identifiers to pull back the associated information via the appropriate services. We are at risk of broken links with things like blog posts but we tend to consult the blog for creative commons licensing and respect it, often depositing a relevant blog post onto the database and creating the link out to the originating blog post. If the blog changes later and there is no redirect then we at least do have the original source info on the database to load. Link rot is something we are trying to wrap our head around and in terms of data we foresee that application of DOIs for data, as Thieme have done recently for spectral data, could be an important approach.

You also say, “Blogs should be searchable too.” Are blogs (which can be deleted in seconds by the owners) some of the places that lost chemistry can be found? Are Open Notebooks basically blogs? Or are they wikis? Or what?

There are some wonderful blogs out there for synthetic chemists especially. I like the blog of Paul Docherty and “Milkshake” who runs the Org Prep Daily blog. Paul’s blog is generally a detailed analysis of a particular synthesis with links to the original paper. Milkshake posts details of particular syntheses and a lot of experimental detail. We copy the contents of both to ChemSpider and link out to the original posts. I would call this Lost Chemistry….many people had never heard of these blogs until I started pointing to them. I believe we have driven traffic to them. Open Notebooks could be blogs (like OrgPrepDaily) but in the pure sense of the definition from JC Bradley the wiki format with date and time increments displayed throughout the progress of the work is more appropriate. I would say most ONS pages are wiki-based at present.

One new buzzword is “Linked Data.” Is ChemSpider an exemplar of that concept? How does linked data differ from semantic linking?

For the purists I believe that Linked Data is the exposure of data using semantic web layers such as RDF (Resource Description Framework). For myself I believe that ChemSpider is indeed an example of Linked Data even in its present form. We are not yet exposing RDF on ChemSpider but have had it on our plans to do so. There is, (un)fortunately, always something else waiting for our attention.

In your very interesting slideshow, “Navigating the Complex Web of Chemistry Using ChemSpider,” you state on one slide, “Publishers can enhance their articles…” Could you please elaborate on that and tell us what you see as the value of Elsevier’s Article of the Future project?

The publishers are not naïve in thinking that “publications” are paper-based for not very much longer. So much of their delivery vehicles have had to be reinvented over the past few years as users have come to expect access to electronic forms of the article ahead of paper-based delivery. The American Chemical Society just this year announced the first step to migrate away from paper-based delivery and I’m not aware of any of the Open Access journals delivering a paper-based format. A number of the publishers are already active with delivering enhancements to the articles that can only come by enabling electronic forms of the article. I include the efforts of the Public Library of Science (PLoS), Nature Publishing Group (NPG) and the Royal Society of Chemistry (RSC). In Chemistry especially the RSC led the cure with their award-winning Project Prospect semantic mark-up project whereby certain terms within the article would be “marked-up” and linked to information such as chemical compound details, definitions in the IUPAC Gold Book etc. The ChemSpider team developed our own version of semantic mark-up, called ChemMantis, and linked out from chemical names, reaction names and biological entities such as proteins, enzymes, bacteria etc out to the associated Wikipedia record. We used the ChemSpider database as the navigating layer to help link from chemical compounds out to chemical vendors, analytical data and related publications. We ended up producing a “ChemSpider Journal of Chemistry” to house Open Access articles submitted to us by the community. Many of these were synthesis procedures and took advantage of our mark-up capabilities to enhance the article.

I believe that Elsevier’s Article of the Future could be a good representation of what electronic articles might look like in the future. I can only envision that the production of such articles will be very labor-intensive for the foreseeable future until processes are optimized and authors assume more of the additional load associated with producing an electronic article of that form. Alternatively, and more likely, an increasing amount of the article formatting will be farmed out overseas due to a more advantageous price point.

What is the ChemSpider Synthesis and what do you mean by “all things synthetic?”

One of the outcomes of our delivery of the ChemSpider Journal of Chemistry was a series of submissions of synthesis procedures. By the third issue it was clear that there was a bias to using the platform to expose organic syntheses – short articles explaining particular reaction transformations…generally single step syntheses defining starting materials, products, experimental conditions and associated analytical data. Ultimately, it was turning into a “reaction database” of synthesis procedures. Our intention with ChemSpider Synthesis, an interim name for what we will deliver, will host short articles regarding synthesis. They will be peer-reviewed using a blog-like feedback system where comments will be posted to the article. The community will be asked to contribute to the content and, in parallel, we will harvest synthesis procedures from the RSC archive of many tens of thousands of articles.

Could you please discuss the concept of public peer review and how might that change the current quite rigid tenure system? How do you encourage young scientists to get involved in Open Science in general and ChemSpider in particular? Jean-Claude Bradley seems to excel at outreach to chemistry faculty and young scientists and you to scientific societies, database managers in government and industry and to publishers.

Public peer review is, in many ways, already happening. The blogosphere has fast become an environment where science and publications are openly discussed and critiqued in the public eye. Take for example the recent blog discussions regarding sodium hydride as an oxidant that were conducted on the TotallySynthetic Blog . This blog post openly critiqued science reported in JACS and in the process removed the journal and the authors from the exchange. Since such “peer review” is already occurring online, and the example given is not the only one, the near future will see peer review and commentaries being posted directly to a publication online similar to what we are seeing already in the blogosphere. Authors will be held accountable to their work not only by original peer reviewers but also by the community at large. This will take some gentle navigation in the early days to deal with potential flame wars and open attacks but ultimately is likely to become mainstream and expected from the publishers. Personally I believe it will be quite some time before such openness will have an impact on the tenure system and such a system is entrenched, in my opinion, in local organization politics and relationships over productivity and scientific impact. At the end of the day interpersonal relationships and conformance to an organization’s expectations and needs will define tenure conversion.

Speaking of Jean-Claude Bradley, could you please give us your views as to who excels at what vis-à-vis raising the public profile of Open Science? Do you agree with my characterizations here:

Jean-Claude Bradley: The main conduit and public face of Open Science to working chemists in academia. Ambassador and guide to Open Science to non-scientists. Explicator extraordinaire on the actual practices and value of Open Science and Open Notebook Science in particular.

JC is like the “billboard of ONS” and I mean that in a positive way. He speaks from the heart regarding his passion for ONS, he demonstrates true value and benefits to the approach, has brought together a team of disparate collaborators to produce demonstrations regarding what openness, services and a willing group of people can produce as an outcome. JC focuses his efforts on spreading the word, takes no offense when people don’t support the direction and knows that, ultimately, ONS will have a growing prominence in the future.

Cameron Neylon: Tools meister and theory man. Connector to industry (e.g., Google vis-à-vis Google Wave, and Elsevier.) Tireless and charismatic advocate and astute analyst of key developments in Open Science.

Cameron is a connector too. He is passionate about Open Science and a masterful communicator. Some of his blog posts for me are very much “I wish I’d said that…” in nature. Cameron has a way of bringing clarity to the challenges we face, offering some solutions but in a way that he is not wedded to his approach but to a solution. He is a bridge-builder and, in my opinion, single-handedly got science and Google Wave connected efficiently with the Google staff. There are many people discussing Google Wave and a number of people working with the technology but Cameron has marshaled us into action. He is a trusted evangelist for how such solutions can be applied to science and has the ear of many people, mine included. I just wish we could do more faster to support his vision!

Michael Nielsen: Thinker and theoretician on Open Science of a philosophical bent.

As with most people I have met who are involved with Open Science Michael is passionate, opinionated, thoughtful and fearless. I’ve met Michael only on two occasions, one of these where we shared the podium at the Library of Congress. His presentation was reflective in a way that it calmly called us to attention and action around Open Science. He has the ear of the publishers and some of his blog posts have the community listening, wondering, concerned and optimistic all at the same time. It depends on WHO you are in the community! As I am now in publishing this post was particularly interesting.

Andrew Lang: Supporter of all of the above and master of the nuts and bolts of the tools and technologies of Open Science.

It’s been many years since I saw the A-Team (but I hear they are making a new movie!) but if you ever saw it you’ll remember that you could lock the team in an old garden shed and with baling twine, an old lawnmower and a deck chair they’d be able to make a top notch speed racer. Andy is that character in the world of plugging together online resources to the benefit of those doing Open Science. He’s worked with JC Bradley and used Google Docs, Web Services and Open Data to publish a book on Open Solubility Data on Lulu. The paper co-authored with JC regarding Chemistry in Second Life does a great job in detailing how he is a plumber using the necessary tools to get a result. We’ve worked together with ChemSpider and the Open Spectral Data on the database to create the Spectral Game, both 1D and 2D . Andy is fast, efficient and not shy…I appreciate him asking us for things he needs…it improves our services and he gets to give away to the community for the benefit of all.

Bora Zivkovic: Organizer of the key Conference ScienceOnline (where you will give a presentation this year on ChemSpider) and influential blogger.

Bora is wonderfully influential, easy to talk to, very connected and prolific. He is very valuable to me keeping me connected to what’s going on in the world of science through his tireless communication via all of the delivery systems he uses. He is a master of the social network and a true evangelist for online science. You’ve seen how much work he has done on his blog so far to draw attention to ScienceOnline. While he is not the only one working on it he has a very loud voice, in a good way, in drawing attention to the conference. It’s been fully booked for months…and in this economy. It lends credence to the quality of the meeting as well as to how Science Online is becoming more high profile. Good!

Antony Williams (that’s you): Builder, innovator and creator of key tool of Open Science, ChemSpider. Master of building basic platforms of Open Science and standard science and adroit and effective leader of outreach to mainstream scientific societies and organizations.

Is that about right or am I way off here?

I’d define myself as an Idea Guy with a try-it-and-see mentality. I’ve worked in government labs, in academia, in Fortune 500 corporate America, in small start-up transitioned to established presence. I now work for a British publisher and have owned two of my own companies. There is a place for ideas in all places of course but the smaller the organization the more likely it is that you can run in many directions trying out various things. In our domain that only holds true if it requires sweat and intellect and not capital investments. So much was possible with ChemSpider because the platform was cheap and the investment was intellectual sweat. I still like to try out many ideas in parallel if they have low time investments. Some of the greatest pay-off projects I’ve ever been involved with come from such investigations. There are others who I judge work in a similar way and getting a lot done with minimal resources…Andy Lang, Rich Apodaca and Egon Willighagen among them.

Despite my recent roles that have been more business oriented I still think of myself as a scientist and try to keep my hand into NMR though it’s limited today to software algorithms for NMR prediction and computer assisted structure elucidation. There’s a list of my papers on Mendeley and a couple of new ones in preparation now. I am fortunate that I have remained engaged with ACD/Labs at a technical level and get to work with some of the best intellect in the world in terms of NMR prediction and structure elucidation algorithms. I believe that to improve it is best to surround myself with people I can learn from and that invigorates my grey matter!

Could you please discuss the concept of ChemSpider Everywhere and how ChemSpider is linked to from blogs and provide examples of open source applets and ChemMobi—in the latter case could you provide us a scenario of how a scientist might use ChemMobi while, say, in the audience at a talk at a scientific conference or in a chat with a graduate student during a chance encounter in the hallway of a chemistry building?

The concept behind ChemSpider Everywhere is that our web services will allow those systems and scientists needing access to ChemSpider resources will be able to get to them. I’m living a kind of “Intel Inside” mentality where structural information based on curated dictionaries connected to associated data can be fed into systems as necessary. Where is this happening already? Our web services are already integrated to mass spectrometry software from Bruker, Agilent, Waters and Thermo. There is interest in tapping ChemSpider to retrieve chemical structures associated with mass spectral data so they will fire off a file from their processing software and hit a subset of the ChemSpider database, generally a set of databases containing drug-related and metabolism information (KEGG, Drugbank, Human Metabolome Database etc). When they hit the database with a query for monoisotopic masses and narrow the search on these databases they will generally retrieve an appropriate set of hits and these are not just structures to embed into their software but links to ChemSpider with all of its rich resources.

Our intentions is that ChemSpider will be everywhere…in an appropriate manner supporting the community. We welcome more ideas of what that would look like…but are not short of our own!

What is an InChl and what is an InChl Resolver and why are they important?

An InChI is an international chemical identifier and is a way to represent a chemical structure in alphanumeric text. A very basic definition is on Wikipedia and that gives some basic figures showing how a chemical structure breaks down into a series of alphanumeric layers to describe the complexity of a chemical structure. ChemSpider was built on InChIs as a way to deduplicate structures and allow fast structure searching. InChI is becoming part of the connection network for chemistry online and I provided an overview of both internet-based chemistry and how InChIs are important to creating a structure searchable internet in a recent presentation to Drexel university students (available as a video on SciVee).

From my initial blog post we took the feedback and with the kind support of the RSC we went off and built an example of a resolver. It’s a proof of concept and what is necessary is really a federated approach where multiple resolvers can be integrated. We are presently in discussions about this with other parties and a federated resolver will be available, in proof of concept form, later this year.

Could you please discuss your work with Wikipedia and your reactions to its recent move to be less open and more reliant on expert editing? Is that a good thing or bad thing vis-à-vis ChemSpider and for society at large and for Wikipedia itself?

The best overview about starting the work was written almost two years ago now. What was initiated after a conversation with Martin Walker from the Wikipedia Chemistry team was a project whereby we would examine every chemical compound on Wikipedia, atom by atom, bond by bond, and validate the correctness of the displayed structure relative to its association with the chemical name, the CAS number, the PubChem link and other related data. What started out as a project that might take a couple of months is only now nearing completion. It has involved discussions literally down to a single stereo bond as it did with Tacrolimus.

I confess that I am only slightly aware of the situation of Wikipedia becoming less open and more controlled in its editing. On ChemSpider we have always had users, curators and master curators, proactively acknowledging skills upfront and giving more responsibilities to certain parties. This has worked pretty well for us. Wikipedia should be grateful to all contributors. Certainly the contributions of experts to validating and enhancing articles will be very important. Personally I think articles on Wikipedia are, in general, very useful when they are more than stubs.

Could you please discuss ChemSpider’s relations with PubMed and other services of the National Library of Medicine?

Our relationships to date are simply those of using PubMed services/API to access information and data to link up to ChemSpider. PubMed is truly an amazing resource and our connection last year delivered at the ACS really raised some eyebrows regarding what’s possible as a result of integrating public resources with the appropriate programming interfaces.

How is it going with the RSC? Do you have any advice for those who have created Open Science tools that start to garner interest and acquisition offers from mainstream publishers and scientific societies?

It took a while to migrate the ChemSpider platform into the RSC environment. We were moving the system from three fairly nominal servers running in a basement to an infrastructure based on virtual servers. We also moved from a “continuous beta” where we were updating code to the live environment on a regular basis to an environment where we had development servers, test servers and live servers. This migration took a while but the benefits are that we have full IT support now and are not carrying all the responsibilities for maintaining the hardware, the backups, the core software platform (SQL server, IIS etc). We also have less risk in terms of power outages and the pipes serving up ChemSpider are much thicker. The benefits to the user are obvious…better uptime and faster overall response from the site.

In terms of people who have created Open Science tools and want to garner interest in terms of acquisition my suggestion may be quite contrary. Don’t pursue the sell off as the endgame but build the appropriate solution for your users, develop a following and let your success speak for itself. I believe that’s what we did well…we created a solution of value to the community, stayed focused and on task and let the community speak on our behalf regarding the value of what we were building. Hopefully the publishers and societies are watching and will engage.

What are you most proud of vis-à-vis ChemSpider? What have been the biggest challenges since you started working on it and what has been particularly gratifying about the relationship with the RSC? What are your plans, if any, for expansion in the US?

I am most proud of the fact that we stayed true to our vision of “Building a structure centric community for chemists.” We have been upfront and honest in all of our discussions with our users and the community via the blog and on many other public forums. I believe that we have earned the respect of our users and am humbled by the number and quality of scientists who have been willing to support and work with us.

We have no immediate plans to expand in the US at present and need to balance expansion of the ChemSpider resources with overall project needs. Our team is not involved only with the delivery of ChemSpider but with a number of other projects to support cheminformatics within the organization.

What scientific conferences do you recommend that young scientists interested in Open Science attend?

You and I will both be at ScienceOnline2010 in January 2010. That would be a good one for exposing people to what’s going on with Science Online, much of it Open. Many of the major conferences in any of the sciences now have sessions regarding data sharing and Open Science..it’s just a matter of looking for the session. Certainly my experiences with the Google SciFoo camp, one I was fortunately invited to on two occasions, was one of exposure to a lot of Open Science…unfortunately it’s invitation only.

What blogs should they read? Yours for one, right?

Mine is at http://www.chemspider.com/blog/. In recent months I have stopped visiting my RSS reader as much and look for what dribbles onto Twitter from the blogs and navigate over. Ones that I visit regularly are 1) Science in the Open from Cameron Neylon, 2) Useful Chemistry from JC Bradley, 3) Michael Nielsen’s blog, 4) John Overington’s CHEMBl’og, 5) the Mendeley Blog and 6) ALL of David Bradley’s blogs. I read a lot of others also, but this is a short list.

Whom should they follow on Twitter?

I’d suggest following David Bradley, Timo Hannay, Duncan Hull, Egon Willighagen, Cameron Neylon, Rafael Sidi and Chris Anderson (Wired Magazine). What these gents have to say is specific to my mixed domain of cheminformatics and publishing so may not be of interest to chemists directly.

Should they immediately jump into the lively Life Scientists room on FriendFeed?

As with all forms of social networking tools online I would say that people need to have an interest in such an environment to begin with. Many people don’t read blogs yet, many are unaware of what RSS feeds are, Twitter would be an annoyance and FriendFeed just one more on the list. It is a very small fraction of the community that is using these tools but it is growing of course. I find FriendFeed of value to ask questions and engage a group of domain experts in discussion but the reality is that, for me, this is a tight knit community and I could engage the majority of them directly by email. I believe that Cameron Neylon and JC Bradley have had success in using FriendFeed to initiate projects and activities around funding applications. The truth is that there are so many groups to interact with and so many activities already underway for ChemSpider that I have backed away a little from all of these tools of late just because of time limitations. I’m focusing instead on building closer working relationships with a select group of people with whom I can get things done and produce an outcome or measurable output. I found that I was losing a lot of time in a week on conversations that didn’t lead anywhere. An interesting discussion was recently started here.

What are your plans for ChemSpider for the next year? For the next five?

ChemSpider was conceived in December 2006 and released to the public at the Spring ACS in Chicago in 2007. In terms of a functional system it’s less than 3 years old and having a 5 year vision would be as simple as having chemists think of ChemSpider as their first port of call to source information about “chemicals” as well as host information about chemistry. Information about chemicals will include properties, data, associated literature, suppliers, associated scientists, Open Notebook Science pages, links to information in other databases and data sources and so on. Hosting information about chemistry will include the chemical substance itself but also associated data, synthetic procedures, analytical data etc. generated within a scientist’s laboratory. If we can make this happen at a minimum then we have delivered a foundation dataset and appropriate set of web services to feed the developing semantic web for chemistry. In so doing we will have, hopefully, delivered one of the primary search engines supporting internet-based chemistry.

Finally, who are your heroes in chemistry, science generally, academia, technology and in any other aspect of life?

My heroes in chemistry are people who I believe have directly mentored me in a way that has led to an improvement in my understanding of some aspect of my work. In this list I include Gary Martin who has taught me much about NMR spectroscopy (and we have published a lot together!), Keith Preston, my PostDoc supervisor, now retired, who taught me much about how to question experimental observations and Mike Detty and Steve Godleski who I worked with at Kodak running many midnight experiments just out of interest and passion. I’m sure that none of these people will be recognizable names for your audience.

I’m also hoping to use some of my energy to raise some money for asthma as one of our sons is asthmatic. If anyone out there is connected into the asthma not for profits and can connect me up that would be great. Let’s see how it goes!

Thank you for your time, Dr. Williams.

I asked to interview you because you embody so many interesting developments in so many different respects. You are a bona fide scientist, an employee at one of the most interesting startups in the world of Health 2.0, someone on the cutting edge of the commercialization of the fields of personal genomics and personalized medicine, and are well connected and respected in the world of Open Science (as evidenced by the fact that you have recently co-authored a paper, “Article-Level Metrics and the Evolution of Scientific Impact” with one of the leaders of Open Science, Cameron Neylon).

Thus, you are a fascinating case study of how scientists are helping Health 2.0 companies contribute to the generation, analysis and use of consumer-contributed data, which also makes you and your work of interest to those of us who are interested in the subjects of user-generated content in the health sciences and in the e-patient and participatory medicine movements, of which 23andMe is an exemplar. You also interest me because there are relatively few female leaders in the field of Open Science and I would like to use you as an example of female accomplishment in that realm so as to encourage young girls to get interested in the subject and in science in general.

I envision, then, as potential readers of this interview those who may be new to the subjects of Open Science, those who already follow the subjects of retail genomics, those who are potential users of 23andMe but who want more information about the science behind it, those who are interested in the subject of social networking in the field of consumer health and those who would benefit from a primer on the field of Web-based genetic testing services. Other potential readers could include physicians and other medical providers who may not realize that in coming years they may encounter patients appearing with material they have printed out from the sites of companies such as 23andMe and will ask their physicians how the physicians intend to use such information in the treatment of such patients—(given that the Web site of 23andMe includes such wording as, “With 23andMe, you and your doctor can determine whether certain medications will be right for you.”)

Let’s talk a bit about terminology. As I read around on the Web about 23andMe I came across various terms used in conjunction with it. Could you please tell us what each of these are, what the differences are between them and which ones accurately characterize 23andMe:

Personalized medicine
Personalized medicine is the use of information pertinent to the individual to guide healthcare rather than broad standards applied unilaterally over most patients. To some extent, medicine already uses some information like this — medical history, family history, clinical measurements — but to a large extent ignores other information that may be important, like genetic variants unique to that person. When people talk about personalized medicine, they often talk about incorporating the patient’s genetics into drug treatment decisions (should the patient take clopidogrel, or warfarin? Are they going to have an adverse response to choline ester drugs used as a muscle relaxant in certain surgeries?), an area known as pharmacogenetics (how a person’s genetics influences how they metabolize drugs). Specialties like oncology are already using these principles quite a bit. But personalized medicine is also becoming more about preventative medicine (knowing your genetic risks for health conditions so that you can take steps early to prevent or monitor for them).

Participatory medicine
I have less experience in this space, but from what I understand, participatory medicine describes a phenomenon where patients are more engaged in their healthcare and in the research related to health conditions they may have. The Society for Participatory Medicine says this on their website: “Participatory Medicine is a cooperative model of health care that encourages and expects active involvement by all connected parties (patients, caregivers, healthcare professionals, etc.) as integral to the full continuum of care. The ‘participatory’ concept may also be applied to fitness, nutrition, mental health, end-of-life care, and all issues broadly related to an individual’s health.”

Consumer genomics/genetics
This term describes genetic testing services — usually for health or genealogy — that are available directly to the consumer.

Gene-testing services
This probably describes any service that determines variants in one or more genes, usually for the purposes of disease screening. Examples are genetic tests for inherited diseases like cystic fibrosis or Tay-Sachs. The type of testing (whether it’s specific variants tested, a scan of the whole gene for mutations, etc; one gene or a panel of genes; etc) varies. Most of these are ordered through a professional healthcare setting, though some are also available to the consumer. These tend to be fairly expensive, at least compared to consumer genetics services that survey much more of the genome, but they are meant to test for a particular condition and so may be more comprehensive, sensitive, or specific with regards to that condition.

DNA tester
Not sure what this refers to… but perhaps it’s the actual test kit for genetic testing, e.g. spit tube or cheek swab set?

Retail genomics
I think this is just a press term for consumer genetics.

Personal genomics
I take this term to mean the application of genomic technologies to individuals as individuals, rather than genomics applied to anonymized individuals or populations, and where the individual has the ability to interact with and control their genomic data.

Personal Genome Service™ (which term 23andMe appears to have trademarked)
This describes 23andMe’s consumer services, which currently includes testing for over 500,000 genetic markers for the purposes of ancestry or health information. 23andMe also provides tools for interacting with and viewing the data, and educational and informational resources for exploring the intersection between your genetics and health-related topics.

Genetic testing
This encompasses any test that determines your DNA sequence at specific locations in the genome or the presence/absence of genetic markers or variants, usually applied in the context of health, forensics, or ancestry.

Could you differentiate for us what might be the differences between genetic testing and personal genomics? How does 23andMe, for example, differ from the firm Navigenics for instance, which uses the term, “personalized genetic testing?” Are 23andMe and Navigenics nearly identical or are their aims, services and target markets different? Sometimes, for example, the two firms collaborate in defending the value of their services as in their joint rebuttal to some of the statements made in an article in Nature (including some comments therein by Craig Venter), “23andMe & Navigenics’ Open Letter to Nature.”

I consider both 23andMe and Navigenics to be providing “personalized genetic testing”. Perhaps the reason why 23andMe uses the term “personal genetics” and Navigenics uses “personalized genetic testing” is that Navigenics puts less emphasis on the raw genetic data and exploring your genetics than 23andMe, and instead focuses on information on specific markers related to disease (23andMe also provides this). Navigenics currently takes a more physician-oriented approach, with on-staff medical personnel, while 23andMe currently focuses almost entirely on the general consumer. In the end, though, both companies are direct-to-consumer genomics companies that believe that individuals should have access to their genetic information, and so our interests are aligned in many policy discussions.

Could you, as a scientist, tell us a bit about that brouhaha and, in a way, doesn’t the fact that 23andMe and Navigenics have been a focus of discussion in such prestigious publications indicate that they have arrived as serious players in the field of genomics and are not simply trendy boutique services for health-obsessed, cash-rich consumers?

It’s true that there has been some public debate over personal genomics and DTC genetic testing. Similar debates and disruptions always happen whenever technology becomes readily available before social and regulatory frameworks have adapted to cope with them (e.g. peer to peer file sharing and the music industry). I think that most people are recognizing that consumer genomics is not something that is going to go away, and as two of the major players in this space, 23andMe and Navigenics have drawn much of the attention from those who would comment on this rapidly evolving industry.

Could you tell us a bit about your background? What was your graduate degree in and how did you come to work for 23andMe?

I came to 23andMe from a graduate program in Biomedical Informatics at Stanford University under the tutelage of Dr. Russ Altman, who is a leader in the field of pharmacogenomics and is also a member of 23andMe’s scientific advisory board. Being in his research group exposed me to the ideas of personalized medicine and the potential impact personal genetic information could have on healthcare. Bioinformatics students also gravitate towards rich data sets and emerging technologies — something that the personal genomics has in spades — so it’s no surprise that two of the founding R&D architects at 23andMe were also graduates of the Biomedical Informatics program. As I grew closer to finishing my degree, I knew that I wanted to work on something that had an impact on people and that combined my interests in science, society, and communication. Personal genomics is a natural fit because it touches on so many aspects of healthcare, education, culture, information, and technology. And the placement of 23andMe in Silicon Valley along with its accessible approach to genetics appealed to me.

Are you a bioinformatician—or are you a biomedical informatician? Is the latter an actual job title? What is the difference between the two fields?

Bioinformatics and medical informatics usually refer to biology-focused vs. medicine-focused informatics, though the distinction between the two is becoming less clear as translational science becomes more important. That is, there is more effort these days to connect discoveries made in basic research to treatments or practices we can apply in a medical setting (so-called “bench to bedside”). Biomedical informatics is a term Stanford uses to encompass all aspects of informatics in both of these areas. As far as job titles go, they so rarely describe what someone does accurately, so I won’t even go there.

Your official title at 23andMe is “Scientist, Content Curation,” correct? Could you tell us what you do on an average day? Do you help compile and edit the reports listed here, for example? What does that entail?

That is apparently my official job title, though like I mentioned before, it doesn’t nearly encompass everything I do. Similarly, it’s difficult to say what I do on an average day because there hasn’t really been an “average” day! I have helped on some of the reports listed on the 23andMe site, though most of those were already around before I started working here a few months ago. As we go forward, I’ll have a much more active role in finding ideas and information for new reports and implementing some of them on the actual site, as well as contributing regularly to the company blog and helping with the development of new phases of the online product.

For the actual health reports, our criteria for including a genetic association on our website is available in a company white paper, “Guidelines on Vetting Genetic Associations”, available here. Much of the job of curation is to determine whether literature gathered on a disease topic fits that criteria.

You provide a charming account of your first weeks on the job at 23andMe in the blog post, “New Job and Curation 101” and this passage indeed answers many of the questions I intended to ask you, “So what is personal genomics, anyway? We’ve known for a while that genetics – the sequence of DNA inside our cells – plays an important role in our form and functioning. Many diseases are caused by changes in DNA (often in genes, parts of DNA that code for proteins) that alter the normal functioning of cells, though not all genetic differences lead to negative changes. (Genetics can also tell us about ancestry – who is related to whom and the history of populations – but I won’t be addressing that in this post.) Where it gets personal is when you apply it to individuals, such as when someone gets a genetic test to determine whether they have or are at risk of developing or passing on a particular disease. Where it gets genomics is when we use high-throughput technologies to do what is essentially thousands of genetics tests at once. Put them together, and you get personal genomics.”

Is genomics, then, basically genetic testing on techno-steroids? What can scientists learn from genomics when it comes to specific diseases and what does that mean for sufferers of that disease? For example, I am quite interested in the subject of amyotrophic lateral sclerosis. In 2007 an article was published in the New England Journal of Medicine, “Whole-Genome Analysis of Sporadic Amyotrophic Lateral Sclerosis.”

Could you explain, using that example, what such studies mean for average people with the diseases so studied?

You could think of genomics as many genetic tests done in parallel — instead of determining the sequence at one or a limited set of locations in the genome, you determine it for many thousands or more. Scientists have been using genomic approaches to identify areas of the genome that have previously not been known to affect disease. This has led to the discovery of new genes involved in disease development, in some cases, though in many cases it’s still unclear why a particular region has a certain effect. They identify these regions by comparing the genomes of people with a certain condition (such as ALS) to people without that condition; regions that are significantly different between the two groups are more likely to have something to do with that condition. Right now, these studies don’t mean too much for average people with the disease — they simply add to our knowledge of genetic factors that may contribute to the disease. (In a few cases, the findings may eventually lead to a drug target or other therapeutic discovery.) They may, however, help identify people at greater risk for developing a disease.

You discuss single-nucleotide polymorphisms (SNPs) in your contributions to the SNPwatch Category on the Spittoon. Could you elaborate here, “It turns out that there are millions of single locations in the human genome where the exact sequence of the DNA might differ between two people, and these places, called single nucleotide polymorphisms, or SNPs, can contribute to differences we can observe, such as whether you flush when you drink alcohol or how easily you put on weight. 23andMe personal genomics kit determines what your sequence is for a representative subset of SNPs. Many are already known to be associated with certain conditions, and new research is being done every day to uncover more and more of these associations.”

To wit, how would I as a 23andMe user such information? As a one-time fact to bear in mind when I plan my daily meals or as a deadly serious matter requiring further investigation in consultation with a doctor or a genetic counselor?

There are different types of information you can get from your genetics related to health. Some diseases are known to be caused by specific mutations in genes, and so a positive result for one of these could mean a high probability that you have or will develop the disease (if it’s a dominant trait, you only need one copy of the mutation; if it’s recessive you need two copies) or could pass the mutation on to your children. 23andMe currently covers a couple dozen of these types of conditions. Your genetics also affects how you respond to certain drugs, and 23andMe reports on several of these as well. These two types of information are probably most important for a medical professional to know. For other conditions (most conditions), your genetics affects your risk to varying degrees, and environmental factors are very important. They are mostly things to keep in mind to be more informed.

Note that the other product 23andMe offers is Ancestry — and many people are using it to discover new distant relatives and explore their family trees.

What is a genomewide association analysis?

This is the analysis of a large number of genetic markers (typically in the hundreds of thousands, or more) over the entire genome to identify genetic markers that may be connected to a disease or condition. See two passages above.

I must say that you are a very skillful elucidator of these quite arcane matters. This passage is very helpful for example, “The genetic testing kit is one part of the product, but the other part is information – what knowledge is there about associations between the SNPs on our platform and health traits or conditions? What does your particular data mean? The science is far from exhausted on this subject, and in order to stay up to date with the research, 23andMe spends a lot of effort on curating the scientific literature for new genetic associations and presenting the information on our website for our customers.

Day to day, this means that we keep track of papers recently published in scientific journals, skim through to find ones that may have promising findings, and then vet these more thoroughly to see if they pass our stringent scientific standards. If they do, we extract the bits of information we need and put the bits together in reports that will eventually become part of the content on the website. It’s a job that definitely benefits from an organized system and an eye for detail – as well as a sense of curiosity.”

That is a very helpful passage and I would say that 23andMe excels at public education and building bridges between the general public, the increasingly large numbers of sophisticated health information seekers known as e-Patients (as exemplified by e-Patient Dave) and that the Spittoon and the blog of PatientsLikeMe, The Value of Openness are quite fascinating examples of a new genre—the Health 2.0 company public education blog. I am hoping that medical librarians read this interview, given that more and more consumers are going to learn about developments in clinical research and treatments from such blogs and we need to know about such forums.

And on the related matter of online patient communities and patient and consumer health social networking could you discuss 23andMe’s hopes of creating an active community component? Is that going well? Are you getting much traffic in your online communities? Garnering actual traffic seems to a challenge for many consumer health sites—has 23andMe had much luck in that respect?

23andMe has an active, thriving user community, roughly divided into those interested in Health and those interested in Ancestry, though all users can post in all areas of the community forums. As with any community, we have many who are very passionate about their interests, and many who are simply curious about learning more or in finding people like them. We also have surveys which users are encouraged to fill out about various health and environmental topics, for the purposes of conducting our own research studies. Our first paper using data collected in this way was recently presented at the American Society for Human Genetics conference, with novel associations presented for hair curl, asparagus anosmia (the ability to smell asparagus metabolites in your urine), and hair color.

There have been some layoffs at 23andMe in recent weeks but influential journalists like Wired Magazine executive editor Thomas Goetz seem enamored of 23andMe’s services. That is a pretty strong endorsement. Are you confident about the long-term outlook for 23andMe? I heard your colleague Alex Khomenko speak at the e-Patient Connections Conference 2009
and he certainly did a good job in conveying his conviction that 23andMe is capable of serving the public good by doing good science in the commercial sector. Could you please tell us at what other conferences representatives of 23andMe will appear?

I don’t have any information about conferences in 2010, though there is interest in organizing a session at next year’s ASHG meeting in Washington, D.C.

One of the things that I like about 23andMe and me is that it allows you great freedom to keep up your valuable role in the Open Science community, to the great benefit of science, and therefore of patients down the pipeline. Your elucidation on your blog of such complex matters as the basics of scientific curation is really engaging and edifying, “In science, curation involves organization of scientific knowledge and data. An area where this has been especially important is the life sciences, as the amount of information being generated by high-throughput experiments, large-scale projects, and scholarly publishing has skyrocketed. In order to manage this information and render it useful to others, the field of biocuration was born. Any database that organizes scientific knowledge – UniProt (the Universal Protein resource), FlyBase (database for that very important model organism, Drosophila), PharmGKB (a database focused on how genes and drugs interact), etc – depends on curators to keep the information up to date and easy to use.

And so it is with 23andMe.”

And on that topic, I’d like to get back to your reputation as a go-to person in Open Science. For example, I am helping to plan a conference on the subject and went to one of the giants in the field, Jean-Claude Bradley for advice on determining the possible attendance at such a conference. He suggested that I consult you and you very helpfully suggested that I send up trial balloons in Twitter and FriendFeed. The result was that there did indeed seem to be some excitement about such a conference. I would like to ask you, then, how you use Twitter and FriendFeed to keep up on developments in Open Science and science generally. And does 23andMe have a specific Twitter strategy?

I personally use Twitter and FriendFeed mostly to keep a finger on the pulse of science and technology news and developments. I haven’t contributed as much as I’d like to but it’s very useful for me just to stay abreast of everything that’s happening in the world.

23andMe has a Twitter account as you show above. It’s used mostly to communicate with people interested in our company and our service, to help spread stories people are sharing about their experiences with our products, and to broadcast news about the company or the industry.

You say on your blog, “Since my work is even more directly tied to the literature than it was as a graduate student in academia, I’m also developing an enhanced awareness of issues surrounding scientific publishing – those related to standardization and metadata, publication bias towards positive results, and closed vs. open access.” Could you discuss some of your comments in the article you wrote with Cameron Neylon, “Article-Level Metrics and the Evolution of Scientific Impact?” I was especially interested in the section, “The Trouble with Comments” and found this passage quite interesting, “A spirited, intelligent comment thread can also help raise the profile of an article and engage the broader community in a conversation about the science.

Unfortunately, commenting in the scientific community simply hasn’t worked, at least not generally…Part of this resistance to commenting may relate to technical issues, but the main reason is likely social. For one thing, researchers are unsure how to behave in this new space. We are used to criticizing articles in the privacy of offices and local journal clubs, not in a public, archived forum. Junior researchers may be concerned about the potential repercussions on their own careers…

Another issue is that the majority of people making hiring and granting decisions do not consider commenting a valuable contribution.”

As a fairly recent graduate in the sciences, could you please elaborate on the matter of commenting? Do you think that one can enhance one’s reputation by blogging but that commenting is much less fruitful in that regard? Your comments here are well taken, “…if there is no reward for quality contribution then people will struggle to justify the time involved in generating high quality comments.”

Commenting is one part of the spectrum of scientific content contribution. At one far end is formal publication in a peer-reviewed journal. Commenting online is near the other end of the spectrum in terms of perceived value, but its potential impact is fairly large. Just as reviewer comments on a manuscript can be very helpful, so can less formal comments on a paper. But the barrier to entry is so much lower that commenting has the opportunity to have that much more impact. Of course, that low barrier also means potentially more noise to filter out. And the lack of reward for commenting means that there is little incentive to contribute good comments other than goodwill towards fellow scientists or the scientific enterprise. There is also a tough balance between anonymity and comment quality — anonymity may discourage accountability and foster unhelpful comments, but lack of anonymity may result in reluctance to post honest criticisms, or anything at all.

I do think that blogging is currently placed in higher regard than commenting – depending on the subject matter and quality of the blog, of course. It is also easier to compile a record of blogging than of commenting, since a blog is an archived set of posts in one place, whereas comments may be scattered across a multitude of sites. But Faculty of 1000 is a respected site that is in essence a collection of comments on specific papers, and so there is hope for expanding the scope of scientific contribution to include commenting more generally.

As someone who spends a lot of time looking for grants to list on the site I work on Scangrants, I was quite interested in your comments that those who make granting decisions do not consider commenting a valuable contribution. It will be interesting to see if that changes as those who make grants, such as private foundations and scientific societies, start to adopt social media tools in order to showcase the benefits of their grantmaking activities and engage public interest in them and if the number of venues for comments on scientific projects will increase.

I just left a comment on your article and doing so was fairly easy (provided that one remembers the password for each site where one wants to leave comments). But as you point out, it is hard to see the incentive for doing so except for the warm fuzzies one gets for encouraging scholars engaged in producing such edifying articles.

Could you tell us about the process of writing for PLoS Biology? How did you and Neylon decide to publish your article there? Whose idea was it? Is publishing in such Open Access periodicals any different vis-à-vis process and reaction from readers from publishing in toll access ones?

Writing the ALM article for PLoS was a relatively smooth experience. Cameron had been approached by the PLoS team to write the article, and he contacted me to co-author with him given that it would echo many of the issues I brought up in a recent blog post I’d written. The actual process of submitting the article was done through one of the PLoS Biology editors, rather than the online submission system, and I have not actually gone through the process at a toll-access journal before (I’ve submitted to BMC journals in the past), so I can’t comment too much on the differences. The reaction to the article has been great so far — several thousand views, quite a few comments and ratings, etc. Publishing in an Open Access journal like PLoS (without added media involvement) I’m sure raised the profile of the article to many more viewers than would be possible in a closed-access journal, and being able to gauge this reaction through ALMs is, of course, unique to PLoS.

Finally, who are your heroes in science, scholarship, technology and in any other realm?

Most of the people I admire and look up to are people I’ve had the pleasure of meeting or working with in some capacity. My graduate advisor, Russ Altman, is certainly one. But there are too many to list exhaustively so suffice it to say that these are people who are great teachers, great examples, who are passionate about things and work hard to make things happen, who somehow are able to keep up with everything that’s going on and help edify the rest of us through blogs and social media and podcasts, etc. If you follow the FriendFeed Life Scientists room, you will shortly figure out many of the people I’m talking about.

Thank you for your time, Shirley.

An example of the latter instance of the value of your service is the case of amyotrophic lateral sclerosis. I am quite interested in that subject and in exploring the Health and Medicine category of Futurity just now I came across the article, “Compound Appears To Slow ALS Progression”, which linked to an Open Access article in a scientific journal.

I start with this example because I think it illustrates the potential of Futurity to contribute greatly to stimulating interest in serious scientific research by directly connecting members of the general public to scientific researchers and highlighting the value of the research the latter are doing to people with real afflictions.

To further illustrate the value of Futurity to everyone involved (the average reader, the researcher, the research university) I would like to point out that I was able to link to the article in Futurity to the actual press release from the University of Rochester Medical Center and there noted that the line, “The work was funded in part by the National Institutes of Health”—that is why I think Futurity should be of interest to grantors. I spend many hours working on the grant and scholarship listing service, ScanGrants and am daily moved and impressed by the important work an enormous number of scientific societies, professional organizations, foundations and companies do in funding research and scholarships in the health sciences and I often wish that the public could learn about the projects funded and about the researchers who devote their talents to attempting to cure or prevent often intractable diseases and to frontline clinicians who daily alleviate suffering. That is what I found really powerful about Futurity as a tool for public education about research and grants-funded projects and why I find the furor (more on that later) about Futurity among science journalists so unfathomable and troubling.

After all, Futurity is a boon to mainstream science journalists and science bloggers (the former, alas, often dismissing the latter as dilettantes and amateurs) in that I was able with a few clicks starting in Futurity to learn in detail about one of the lead authors, Berislav Zlokovic, MD, PhD, of the paper mentioned above and even to find his email address and to learn (and here is the value of Futurity to participating research institutions) about the Center for Neurodegenerative & Vascular Brain Disorders at University of Rochester and even if I so chose to email Dr. Zlokovic directly or to contact the press office.

I was also able to learn that Dr. Zlokovic is a biotech entrepreneur and that the University of Rochester hold an equity interest in several companies he is connected with.

I give the example of Dr. Zlokovic and his work on ALS because it seems to me to demonstrate the value of Futurity to institutions that want to showcase the work their researchers are doing for purely perfectly reasonably PR/promotional and public education purposes, to researchers themselves who want to apprise the public of their own work on subjects of keen professional and intellectual interest to the researchers themselves, to laypeople who are interested in health and science (which is my focus, but you also feature fascinating items in the social sciences) and I hope to grantors whom I would urge to join the consortium and take advantage of your skill in showcasing research projects. I would think that foundations and scientific societies would benefit by being part of your distribution network and from links to their Web sites in stories you publish. Do you have any plans to expand beyond your current base of members of the Association of American Universities (AAU)?

When we started Futurity, we decided to confine membership to AAU universities to keep the numbers manageable. Futurity has grown rapidly, from two dozen members when we launched the quiet phase in June to 42 today.

Futurity members appreciate that there are a number of outstanding research universities that are not AAU members, but they also are mindful that we are learning by doing. The consensus is that we should review the AAU membership requirement, but that we should wait a few months before doing so. I expect that we will discuss it early in 2010.

Also, could you tell us how membership in the Association of American Universities is determined? For instance, as an alum of the University of Pittsburgh and Oregon State University, I was interested that OSU does not seem to be a member of the AAU but that the University of Pittsburgh is, but the latter is not a participant in Futurity. Given that the University of Pittsburgh has an extensive array of research programs I am surprised it is not a member of Futurity. How do you market Futurity to members of the AAU or is that even something you feel you should do? Do you leave membership in Futurity up to them? Are some AAU members taking a wait and see stance towards Futurity and if so, why? Or are you adding new members all the time?

All 62 AAU members are welcome to join Futurity. There is a $2,000 annual membership fee to cover the costs of operating and promoting Futurity. It’s important to note that Futurity’s launch has coincided with a remarkable economic downturn. Many universities, both privates and publics, are facing budget shortfalls and cutbacks. Even so, our membership continues to grow.

We have had inquiries from dozens of universities and research institutes outside AAU and plan to revisit the membership criteria in the coming months.

Now, let’s tackle some of the issues that so perturbed science journalists. Futurity’s appearance on the science journalism scene led to a brouhaha among that much endangered species, professional science journalists.

Ironically, the furor over Futurity actually has helped raise its visibility considerably, no? I heard about it in a email message from a medical librarian who had read some of the news stories. You and I talked on the phone and you said that some of the criticisms were well-taken (such as the fact that many of the stories featured on Futurity had no bylines, which you are now adding to many of your stories). You made the point that you have the utmost respect for science journalists and are not attempting to marginalize or bypass them, but that the fact remains that there are fewer and fewer outlets for science journalism and that research universities have to address the fact that much of genuine news value and scientific interest is not getting out to the general public and that Futurity has a place in the dissemination of news in the sciences and research realms. Do you see anything valid in the arguments of science journalists who would take issue with the statement on Futurity that it is, “…an online news source featuring the latest discoveries from North America’s leading research universities?” What is a “new source” these days, anyway? On the phone, you made the interesting point that many people who work in the press offices of universities and other research institutions are themselves former science journalists who have found positions in academia and are, in fact, highly skillful and knowledgeable about what they are writing about in the press releases they send you (or would you characterize them as news stories?). Could you give us some idea of how the stories are generated and delineate the editing process?

PIOs at universities often work very closely with the researchers to translate the science and communicate why a research finding matters. They have very direct access to the researchers involved and a deep understanding of the science. Because they represent the work of a researcher and ultimately the reputation of the university sponsoring the research, PIOs work very hard to produce accurate and clearly explained reports.

And while media relations is still an important aspect of university communications, many universities are also looking for ways to communicate directly with audiences. Some maintain science blogs and very engaging newsrooms. Futurity is an extension of that audience-directed type of communication.

On the phone, you expressed great sympathy for the plight of science journalists in the age of disintermediation and yet you also have wording on the site that might offend them to a gargantuan degree, “…research universities are among the most credible and trusted institutions in society, and now have the ability to deliver their news and information directly to readers without barriers or gatekeepers.” Do your members regard science journalists as barriers? Could you elaborate on what you mean by barriers? And can you give examples of where gatekeeping in fact hindered the ability of the public to feel any stake in the world of research and to form bonds vis-à-vis donations to institutions or just general good will toward academia and the research enterprise?

The main barrier universities face today is not the science journalists, but the shrinking number of news outlets that cover research news today. We see Futurity as a more democratized approach to research news. Futurity covers research findings in all disciplines, including the humanities, social sciences, as well as medicine, engineering, and the physical sciences. It’s a range of stories you’re not likely to find in many other news outlets.

Do you think science journalists would see relationships such as Dr. Zlokovic, ZZ Biotech and the University of Rochester (where Futurity is located) as an example of something that does require more scrutiny or do you feel that there is plenty of transparency in such instances on Futurity?

Futurity operates very transparently and clearly states the source of all its content, linking back to the original press release. Our mission is to clearly and accurately share research news. Futurity offers an accessible glimpse into where research is today and where it’s headed tomorrow. While it is not meant as a replacement for the kind of synthesis and context that science journalists provide, it is a fantastic way to engage the public’s interest in science and research—and ultimately their support.

Are you an employee of Futurity, of the University of Rochester or both?

I am employed by the University of Rochester, which is subsidizing Futurity by donating my time and hosting the site.

Are these relationships between researchers and spin-offs from research institutions precisely the kinds of connections Futurity can help foster to the ultimate benefit of everyone involved, including patients who might benefit from the commercialization of research that might lead to products that might never have been developed if connections weren’t made and publicity generated via new stories about important scientific advances, such as those of Dr. Zlokovic?

Certainly Futurity can help build connections between investors and researchers, while informing the public about the latest research developments.

As someone who spends a lot of time looking for funding for scientific research, I can only applaud the work you are doing in disseminating news about the subject. Do you see a role for Futurity in interesting the general public and consumers of business news in items about research that might have been too tightly gate kept in the old days of mainstream scientific news reporting?

For instance, does an office of research administration periodically send a press officer around to say, departments of biochemistry, nutrition, neuroscience or computer engineering who then says, “Soooo, anything really innovative happening round here?”

You are the sole staff editor at Futurity at his point, correct?

Yes, but I work closely with my editorial contacts at each university who are asked to send me 1-3 of their best stories each week. They make an initial decision about what to send. My selection process helps to further distill the selections down to the best of the best.

Could you tell us how you determine the news value of each item and how you decide what is an equitable distribution of published stories on Futurity per your $2,000 annual fee members? And that seems a real bargain considering the handsome look of the site and the traction you seem to be getting as a source of news to a wide readership.

We look for stories that are both visually and intellectually compelling. We also look for discoveries that will seem relevant and exciting to the general educated reader. Coverage is based on news value. We do not base postings on quotas.

Can you tell us how you syndicate stories and attract readers and track them?

Please tell us about the use of social media. How do you use Twitter, RSS, FaceBook, etc.?

We are exploring several partnership opportunities with news providers as a way to expand our readership. We’re also active on Twitter, Facebook, and YouTube. In fact, Facebook has already become one of our most active referring sites. We’ll continue to look for new and exciting ways to inform the public about research and why it matters.

The site is quite elegant—do you do all the Web design and maintenance yourself?

We’re using WordPress, a blogging platform, to manage the content and site display. I also have support from a Web designer at the University of Rochester who continues to refine the site’s layout and functionality.

How do you determine what fields to cover?

We cover all disciplines.

What is your readership? The educated, sophisticated consumer with an interest in science and society?

The general educated public. Our readers are people who may have read the science sections of newspapers and news magazines, but find that those sections are shrinking or have completely disappeared.

Is it possible to search on Futurity for Futurity stories emanating from specific institutions?

Yes, you can browse by university using the pull-down menu on the right side, by tags, or search by keyword.

And perhaps someday by the funders mentioned in the stories? I would think that the latter capacity would be a boon to funders who want to showcase the interesting research projects they fund. For example, in this story, “‘Conveyor Belt’ Route to Better Vaccines” I noted that one of the funders was the Crohn’s and Colitis Foundation of America. I thought as I read, “Good for the Crohn’s and Colitis Foundation of America for funding worthwhile projects.” I notice that you have a quite elaborate tagging system.

That’s in interesting idea, and one we may want to consider.

I should have asked this earlier in this interview, but I got caught up in how interesting Futurity is: Could you tell us a little about your own personal background?

I’ve been a writer and editor at the University of Rochester for nine years in the communications office. I’ve written primarily for internal audiences (faculty, staff, students, and alumni) both for printed publications and for online distribution.

Who came up with the concept of Futurity? Is it a sustainable model on a sound financial footing? Do you have any competitors? How did its members disseminate research news in the past? How long did it take to get Futurity off the ground? Who have been the key players?

Bill Murphy, the vice president of communications at Rochester, developed the Futurity model in collaboration with several of his colleagues at other member universities. Rochester, Duke, and Stanford have played leadership roles in supporting and managing Futurity’s development and launch. The site launched as a prototype in March and quietly as a beta site in June. We formally launched the site on September 15.

Are you satisfied with how things are going so far? Any major glitches or setbacks?

We’re very excited with the progress so far. We’ll be focusing our efforts in the coming months to promote the site and look for partnership opportunities with other news sites and online content providers.

Thank you for your time, Jenny.

I was in the audience and like so many of the attendees was quite impressed, even electrified by your talk. That audience consisted primarily of medical people (e.g., clinical researchers, healthcare information managers, health policy analysts, nurse informaticians) and they were clearly moved and galvanized by your talk which was entitled, “Gimme My Damn Data!” Indeed, one attendee referred to you as a rock star of the e-Patient movement. Clearly, you are a mover and a shaker, a thought leader and all of those superlatives. Pretty heady stuff, for someone who just two years ago was a software guy family man just trying to survive kidney cancer.

I have since heard you speak at conferences such as Health 2.0,
the 2009 Connected Health Symposium and the e-Patient Connections Conference 2009 .

All of your talks have been superb and I very much urge professional organizations and societies in healthcare (e.g., medical librarianship, healthcare administration, informatics, health technology, consumer health) and in Web 2.0, and Internet matters and scientific communication to sign you up as a keynote speaker. Your talks are uniformly compelling and memorable.

Let’s start with your illness experience and how that led to your activism on the e-Patient/participatory medicine front.

First of all, let us start with the day before you received the shock of a diagnosis. What made you set up that fateful medical appointment?

Great question, because that appointment was a result of my having chosen years earlier to be actively engaged in my care. And it was a result of my having insurance so I could get a regular check-up.

I also want to say that I barely got in soon enough: I requested that physical in September, and my doctor didn’t have a slot until December 30. My case might have been less dramatic if care had been available earlier.

What was your first experience with online support groups? Can you tell us about the Association of Cancer Online Resources, ACOR:

I note, for instance, that you and ACOR founder Gilles Frydman are founding members of the board of directors of the Society for Participatory Medicine. Please tell us about the aims of the society and your role in it.

A pivotal moment in my life was the day my primary physician and I met about the confirmed diagnosis. He handed me a slip of paper that said “ACOR.org” and told me a good friend of his had started it, and they have a good kidney cancer community.

In 2009 the group decided the time had come to get out of “think tank” mode and bring the concepts out into the world. The group incorporated as the Society for Participatory Medicine. As its website says, it was “founded to learn about and promote Participatory Medicine through writing, speaking, social networking, and other channels.” In its first year the principal activity has been to start up the Journal of Participatory Medicine, which will bring it from anecdote to evidence, from principles and concepts to viable science.

ACOR, based as it is on electronic mailing lists, is somewhat old-fashioned technologically vis-à-vis the rise of online patient communities such as PatientsLikeMe. As someone with a strong background in the world of software and tech in general and an empowered patient, could you delineate for us the differences from the standpoint of format, value of information you gleaned and the emotional support you received from each type of support community? To wit, what would you tell a Dave deBronkart of today who has just been diagnosed with kidney cancer to do on his computer (or, indeed, is a smart phone or some other device better for e-Patients?) as soon as he feels ready to start employing online resources to educate himself about his illness?

The best, most current information about a disease (and what to do about it) comes from a well established patient community. Find one for your disease, if you can.

I’m certain that answers will evolve. That’s part of what the Society and Journal hope to advance and support. In the meantime, it breaks my heart every time someone says “Dave, a relative just got a bad diagnosis – where do we start?” and I have to say that no such community exists for that disease. We must fix this.

One of the things you mentioned in your talk is that so much of the information a newly diagnosed patient often comes across on the Internet is not only depressing and disheartening but often unnecessarily, inaccurately so. Could you give us some examples of the kinds of things you read that alarmed and demoralized you, how you later found out how wrong some of the grimmest scenarios were and what you have done since in terms of your blogging and tweeting to educate the medical community and the general public about such matters?

The important thing isn’t whether the news is depressing, it’s whether it’s accurate. I needed to know how bad my situation was. I needed to know what I was getting myself into with the side effects for my treatment; my situation was “Kid, you’re dying. Here’s your lifeline. It’s likely to be rough, so here’s what to expect.”

All I’m doing to educate people is blogging, informed by my own personal strengths and knowledge. I have no medical training but like everyone I have skills from my career and my life. I like to write, I like to analyze complex technical issues and explain them in simple terms, I like to empower people, I believe in the power of our minds and attitudes, and I have twenty years’ experience with online communities (going back to CompuServe), so sharing my observations comes naturally.

In your talk, “Gimme My Damn Data!” you memorably recounted an episode involving a speaker at a medical conference who was painting a bleak picture of survival rates among a certain patient population and your polite but persistent questions to that speaker that made him concede that his data was roughly a decade behind what was actually occurring. Please tell us about that incident and what it suggests about the disconnect between the lived experience of patients and the doctors and other healthcare providers who are treating them and the sometimes somewhat insulated world of clinical research.

I don’t think I “made him concede” anything – I think he was simply conforming to the standard of the medical profession, which is not to assert anything that doesn’t have data to back it up. This is a good thing; “evidence-based medicine” has led to dramatic reductions in unnecessary care, for instance hysterectomies.

Look, here’s what it comes down to: in less than a day my ACOR community had told me to try to get high-dosage Interleukin if I could, because it’s the only thing that approaches a cure. As vital as that fact is, try to find that advice on any establishment website. Wouldn’t you want to know that?

Getting back to the imbroglio involving your personal health data, Beth Israel Deaconess Medical Center, Google Health and your need to almost literally decode the data that eventually appeared in your Google Health personal health record can you tell us why you wanted to create a Google Health PHR in the first place? Did you have qualms over the security and privacy of such an account? Possibly not, given that minute details of it eventually appeared in a national media firestorm!

I don’t fault anyone for concerns about privacy. What could be more important than the right to determine what others know about your most vital personal details? And what could be more important medically than knowing it’s safe to tell your care providers absolutely everything? To me it’s a fundamental part of the right to good care, the right to survive.

I fully support anyone who wants to keep their health data private. And, me being me, I want to jump in and explore.

Who were the main players in that matter? Interestingly, you happened to be a patient at the very institution where one of the most influential people on the healthcare IT front, John Halamka, serves as chief information officer. Did you have any personal dealings with him? If so, what were they like?

John and my physician Danny Sands were co-creators of PatientSite, my hospital’s patient portal. As I said in my post about it, “I think what he wrote about the Google Health interface was overzealous, but I believe he’s a good man, committed to helping us own our own data.”

Were there any bad guys in the Google Health episode?

Certainly nobody with cynical intent, and I can’t imagine calling someone a “bad guy” without that.

Would you advise laypeople to set up such accounts?

If they want to, sure. I think it’s a good thing to be engaged in your health, but not everyone wants to.

In some ways, do you think the Google Health episode may have made hospitals and other healthcare entities more not less hostile to the e-Patient movement? After all, the very public parsing of their billing practices in your own case was a public image nightmare for them. And it didn’t do Google Health much good, either. Do you find, after all the initial headaches, that your Google Health PHR has been a boon for you? Please provide specific examples of how it has rendered life easier for you as a patient and perhaps for your healthcare providers.

Sorry, I have absolutely nothing to offer here. I have no information from anyone about hospital nightmares, and I haven’t seen any indication that the apparent billing fraud or errors have actually caused any embarrassment to anyone.

Could you discuss in particular what, specifically, had gone haywire in the transfer of your data from Beth Israel Deaconess Medical Center to Google Health and what advice you would have for patients, physicians and medical records departments in such matters?

Simply put, it seems apparent that the data transfer wasn’t designed thoughtfully using ordinary IT practices, and was clearly never tested with any real-world data. It was just a gross overstatement for the hospital to say that the interface was finished.

My advice? Think; test; and don’t believe things you read in press releases until you’ve talked to users who’ve used it.

One of the reasons, I think, that your talk was so well received at Medicine 2.0 is that you are not confrontational. You seem to genuinely like medical people and spoke of them with admiration and affection. Could you discuss who have been your allies in the e-Patient movement? You seem to have a special rapport with physicians of a technological bent, for instance, Gunther Eysenbach and Danny Sands. Can you tell us what led Gunther Eysenbach to ask you to speak at Medicine 2.0?

Heck yes I like good doctors: without them we wouldn’t be talking and you never would have heard my name. And good doctors support me in being well.

It’s natural that I talk with doctors – and laypeople – who share my interests … like you. And no, I can’t speak for Gunther.

Life has been a whirlwind for your these past two years. One day you are fighting for your life and the next day you are making a splash on the lecture circuit. One thing I find particularly interesting is your crossover appeal to many professional groups in healthcare. For instance, as I listened to your talk at Medicine 2.0 I kept wishing that you would be a featured speaker at gatherings of the Medical Library Association. I would think medical social workers would have found it enlightening as well. And you are carrying your message of harnessing technology in the interest of a mutually beneficial efficiency to industry-dominated forums as well. For instance, as I mentioned you were one of the featured speakers at the e-Patient Connections Conference 2009 and the attendees of that conference were a different type from the academic medicine/clinical research/public health types of Medicine 2.0. The Web site of the e-Patient Connections Conference 2009 suggests as likely attendees: life science brand managers, ePharma marketers, PR professionals, hospital marketers, Health 2.0 innovators, patient education specialists and anybody who is interested in the best ways to reach, engage and educate today’s empowered patients. Sounds like just the kind of groups who could benefit from hearing what you have to say. Please tell us what takeaways you would give each of those groups as they deal with the age of the e-Patient?

E-Patient Connections is a business conference, about connecting with engaged patients. I’m in marketing myself – I know what it is to want to reach people with information that I think has value. The great challenge the pharma industry faces is the vast array of cases where they’ve been found, very publicly, to be disingenuous or worse. To survive in the era of social media they need to have a rigid policy, rigidly enforced from the top down, to straighten up and be real. There are a lot of good people in the life sciences – they need to be the ones running the show.

Nobody knows better than I do that there’s plenty of genuine value in what the life science industries create. There’s no need to be anything other than straight-up about it.

Please give us your impressions of the Medicine 2.0 conference. What talks did you find most impressive? What do you see as the differences between Health 2.0 and Medicine 2.0?

I can only offer a naïve, young impression – I’ve only been to one of each conference, so I’m not yet a savvy industry observer.

Having said that, Medicine 2.0 was a treat for me because of where I’m at personally in my growing awareness of participatory health. I only read the e-Patient white paper in January 2008, and it’s kind of taken over my life. In comparison, Health 2.0 strikes me as a glitzier “what’s hot” conference, with lots of hip edgy commentary on the leading edge. Medicine 2.0 seemed to have more information on who’s doing what in reality, and seemed to be far more patient-centered, care-centered, vs Health 2.0’s business focus. I have unlimited hunger for both.

Let’s talk about Twitter. One of the most fascinating features of Medicine 2.0 was that there was an enormous screen showing the tweets being generated by attendees even as each speech was in progress. You are a dynamo on that front.

How long have you been on Twitter? Did you get into it primarily in search of healthcare information during the worst stages of your illness or has it been primarily in your role as e-Patient advocate that you have gotten into it? What are your favorite Twitter tools and favorite twits “tweeple” and do you see Twitter as the ideal tool for the e-Patient movement?

Twitter didn’t really exist when I was sick. I signed up a year ago but only became really active last winter. I’m not a knee-jerk “early adopter” of everything new; the persuasive argument came from Jon Lebkowsky, an almost legendary guru in social media. He works at Social Web Strategies in Austin TX, with roots so deep that he was associated with the Whole Earth Catalog people, and who now helps run the amazing South By Southwest conference every March in Austin. Jon knows what makes various tools work, and he told me that while a lot of people use Twitter for what’s considered “pointless babble,” it’s great for making new connections and discovering conversations you otherwise would have missed. Truer words were never spoken.

My Twitter tools are TweetDeck (its multi-column display lets me manage the flood) and, on the Blackberry, UberTwitter. For harvesting post-event hashtag conversations, I use WTHashtag.

You are a great source of intelligence on a huge variety of topics related to Health 2.0 and Medicine 2.0—and on open access publishing too. For example, I just read your tweet about the launch of the Journal of Participatory Medicine and read on the journal’s site this fascinating info:

“The Journal of Participatory Medicine, slated to launch in fall 2009, will explore the extent to which shared decision-making in health care, and deep patient engagement, affect outcomes. Our mission is to transform the culture of medicine to be more participatory. We believe that doing so, as the saying goes, will take a village – perhaps even a large metropolitan area! JPM constitutes a major investment of time and talent in community development…

JPM will be a peer reviewed journal published exclusively in an online journal format, using Open Journal Systems, an open source journal management and publishing system developed by the Public Knowledge Project — a nonprofit partnership between The University of British Columbia University, Simon Fraser University and Stanford University. The open access model will be applied (no fee to access articles), in the spirit of the participatory content.”

Thus, not only are you helping to transform medicine as a sideline you are reshaping the world of scholarly publishing. Do you ever sleep?

Sure I sleep – it’s a misconception if anyone thinks I’ve done any of the work in creating the journal! That’s been done by Managing Editor Sarah Greene and, once again, Gilles Frydman, who not only did the work of building the journal’s web platform (Open Journal System), but wrote one of the articles. He’s the one who never sleeps.

Is there a female version of e-Patient Dave?

There are powerful, smart women in many aspects of the patient engagement movement. (I’d hesitate to start listing them because I don’t want to leave anyone out…. We could start crawling through my Twitter followers if you really want.) This movement existed long before I came along, and, more to the point, smart patients of all genders were doing this long before the term “e-Patient.”

My other favorite precedent for the e-Patient movement was Dr. Benjamin Spock’s Baby Book, which said all the way back in 1946 that laypeople have plenty of knowledge: its opening words are “Trust yourself: you know more than you think you do.”

What are your goals for the next year? The next five?

A year from now I want the Society to have robust funding and a robust leadership team, building membership and web tools that enable citizen participation. I want the Journal to be widely recognized as credible and valuable.

Here’s a call to action: achieving that will take some doing, because right now we have almost no funding and only a handful of people with enough time in their schedule to build that future. So I’m calling for people who do know how to build teams and get funding from foundations. Tom’s white paper, which we now see as so important, was funded in part by Robert Wood Johnson Foundation.

Finally, who are your heroes in medicine, technology and in other respect?

I don’t think in terms of heroes. People I admire are those who have a vision for a better world and have been able to express it in a way that inspires others. I recently ran across a quote by Saint-Exupery: “If you want to build a ship, don’t drum up people to collect wood and assign them tasks; teach them to long for the endless immensity of the sea.”

It’s Landmark that taught me about what existentialists call “authenticity” – getting your past off of your windshield so you can see today more clearly, and be who you really are. When you achieve that, your full human potential can have its effect in the world, and your communication gains new power. Without a doubt that had a pivotal effect on how I faced my cancer, and how I now face the work of waking people up to what’s possible with participatory medicine.

Thank you for your time, e-Patient Dave.

Thank YOU!

Clearly, your interests are broad and touch on such topics as patient empowerment, participatory medicine and social media use by medical professionals and by hospitals and other healthcare organizations as outreach and, yes, marketing tools, to current and prospective patients.

Interestingly, your LinkedIn profile
gives your title as Manager Clinical Research Informatics at Cleveland Clinic and your blog is headlined “A blog devoted to eHealth and Health IT.”

I say interestingly because don’t most people who handle Web matters for large healthcare organizations such as the Cleveland Clinic come from marketing backgrounds rather than the field of informatics and health information management?

I was previously a project manager for IT Web Services at the Cleveland Clinic for 6 years, so I worked closely with the marketing team on web development projects. In my new position, I was asked to participate in the social media initiative because of my expertise in the area.

And could you outline for us why some professional organizations use the term “healthcare information management” and others just “health information management,” whereas you use the wording, Health IT? I envision as the audience for this interview anyone in the healthcare industry who deals with Web matters. And these days that encompasses marketing staff, medical librarians, foundation heads in small community hospitals, heads of medical records staff who have to deal with public demand for their personal health information (as you and I both heard from E-patient Dave in his well-received keynote at Medicine 2.0) and so on.

Could you give us an overview of who is involved in helping hospitals cope with the brave new world of social media in medicine?

Managing social media in health care organizations requires a broad assembling of stake holders who are of a common mindset. These should include: marketing, public relations, information technology, medical education, medical librarians and clinical staff including physicians and nurses. The mix should include early adopters as well as those relatively new to social media to provide a balance. Additional stakeholders to consider are: a patient representative, an attorney (at least as a consultant), and employee communications.

Let’s say I am the CEO of a midsized healthcare organization I want to get a handle on social media. I have heard of Twitter and Facebook. My IT department is fairly conservative in its thinking, and given that it is tasked with guarding our electronic medial record system it is not too enamored of the idea of a foray into social media.

But my marketing people keep badgering me, “We have to get into this space! Our competitors down the road are and we going to lose patients to them because patients want everything on the Web.” Whom do I need to call to a meeting to address this issue and what are the first questions I should ask? Should I have risk management people in the room?

Okay, John I am done being CEO for the day. Let’s talk about what social media are used by medical people themselves in their work settings. As we know, FaceBook is banned in many hospitals. Was that originally simply to prevent employees goofing off on it updating their personal pages on company time but later because hospital IT departments saw it as a genuine threat to hospital IT systems? Can Facebook actually be used as a pathway for hackers to get into electronic medical record systems? Can Blogger? Can Twitter (which doesn’t seem to be banned yet—and is even encouraged and promoted by marketing departments for hospital-wide staff use for corporate mission promotion purposes)? What social media services pose real threats in the hospital IT environment? Given the increasing adoption of FaceBook by such groups as the American Nurses Association, the American Medical Association and American Diabetes Association is it now time for hospitals to get over their anxieties about it or is extreme caution called for?

Any system can be hacked or be potential entrance points for worms and Trojans. This is more likely to happen when employees follow links from Facebook or Twitter than within those applications themselves. Do they hold a greater risk than email links or web pages which show up in a search? It is difficult to say. If internal systems are hardened against viruses and the IT security is monitoring systems and keeping virus and worm monitoring up to date, the likelihood of a system-wide infection is low, but an individual computer might be infected. Social media sites should be judged equally with other websites – if the content is offensive or dangerous, it should be blocked. If it is potentially beneficial to business, it should not. At the same time, employees and managers need to be trained to keep personal use which can be a distraction from productive work, to a minimum.

Do you find that some entities within your organization battle for listing on your home page? For instance, as a former medical library person, I found it a little frustrating that I had to do a Google search to find the page for the medical library and could not easily find it via the homepage of the main site. Is that because the library is mainly for staff use and not so much a part of the public face of the Cleveland Clinic? Do you have any advice for medical librarians on how to increase the visibility of their services? Some medical librarians get so frustrated at seeing their pages buried deep within main corporate sites that they create their own sites. Have you seen that happening not only with medical librarians but with nurses, pharmacists and physicians who just start blogging, for instance? Have there been instances where such rogue but relatively innocuous unsanctioned experimentation has actually been embraced by hospital administrators in the end?

The main website, my.clevelandclinic.org is a consumer-focused website so that other subsites are not intended to be prominent in that context. Medical librarians can focus their appeal by creating mutual links on each other’s websites and through social media outlets like Twitter. Hospitals need to have web presence for health professionals and not just consumers. Our page at http://my.clevelandclinic.org/professionals/ includes referrals, education and research content including library and other online resources. If a marketing department does not include all stakeholders in the primary web presence, rogue websites can appear.

Please tell us about blogging at the Cleveland Clinic and what healthcare CEOs and physicians can learn from your organization’s experience. Please tell us about what policies or practices have actually changed at the Cleveland Clinic as a result of anonymous comments on the blog of the chief of the medical staff.

Blogging at the Cleveland Clinic began as a independent and unofficial blogs by a variety of physicians, nurses and IT professionals. Later, a blog was proposed for the CEO as an employee communication tool to increase transparency and the personal approach of the CEO. Later another internal blog by the Chief of Staff directed to physicians allowed for anonymous comments on his postings. Again, the desire for transparency and openness drives this blog and promotes dialogue with the Chief. There is now also a blog related to information on H1N1. The blog strategy has grown out of a trend to more transparency by the CEO.

I notice that on the homepage of the Cleveland Clinic that you offer visitors the social media options of Facebook, YouTube, LinkedIn and Twitter. But I don’t see any RSS button. Is RSS basically dead in the water on hospital Web sites and across the Web generally? Oops—hold on. I just came across some RSS feeds under the Health Information tab and the heading Events, Resources & Tools. But the fact that I came across the RSS feeds by happenstance suggests that RSS has never really gained traction in healthcare. Thoughts?

The home page is no longer news driven but other pages, particularly on health information http://my.clevelandclinic.org/health/rss.aspx uses RSS feeds for content such as, health information articles, podcasts, and web chats.

Please tell us about your Online Medical Second Opinion service. I was quite interested, for instance, that there was actually an email address right on your site. How rare and how nice! So often visitors to healthcare industry Web sites are lucky to find even an online form to fill out. What has been your experience with such openness?

The Online Second Opinion Service, MyConsult, is a long standing service the Cleveland Clinic has provided consistent with our regional and international outreach to patients who would like a second opinion without traveling to Cleveland.
Having multiple routes to contact Cleveland Clinic including a contact us form and appointment request has been a standard on the website for about 10 years. All requests are expedited to the appropriate department to reply in a timely manner.

Given your endorsement of the tenets of the e-patient movement, could you say that the Cleveland Clinic passes the E-Patient Dave, “Gimme My Damn Data!” test? Do you think hospitals that don’t offer personal health records are actually taking greater risks vis-à-vis falling behind in terms of market share and reputation than hospitals such as yours that offer state-of-the-art systems?

Through MyChart, our tethered PHR, connect to our electronic medical record, is an important service to our patients. It continues to be enhanced with health reminders and interactive features. The users can transfer their data from MyChart to Google Health. PHRs with data from EMRs are superior to PHRs which are free standing or those which receive only claims data as was the experience of ePatient Dave. Hospitals need to provide real clinical data to patients if they want patients to be full participants in their care.

What has been your experience with both Google Health and Microsoft HealthVault? What are the basic features and advantages of each and do you see Microsoft’s major move into healthcare setting the stage for static between those who are deeply into Health 2.0 and its openness to out of the box thinking and Microsoft’s history of stifling innovation and crushing startups?

The Cleveland Clinic was an early partner of Google Health which launched in March 2008. Google Health, as with all of their products, provides a simple, straightforward user interface with a growing number of tools to manage health information with now ads. Microsoft HealthVault’s unique offering is the ability to connect to home monitoring devices. Cleveland Clinic has a pilot with them using this technology. So in this case, I think Microsoft is equality encouraging innovation.

Please tell us about your live chat services. Those are quite impressive vis-à-vis the ideals of participatory medicine. But I was little confused by what to call them in my questions to you. I saw the wording, “Personalized searches by our educators” and “Chat with a Health Educator’ and “Online Health Chat—sign up to learn about medical topics from health professionals in a private, online setting.” But I was not clear as a user if the online chat was a separate service from the personalized searches and if I could choose only to speak to a physician. Do you get feedback from patients who want to talk to doctors and only doctors? Are there plans to institute such services (perhaps called “Talk to a Doc”)? Is it advisable to brand such services in memorably slangy fashion or would that be considered too crassly commercial?

Online chat at Cleveland Clinic is a scheduled discussion with a specialty physicians to answer questions on a specific topic. Personalized searches are a service provided by health educators on a topic requested by the health care consumer. Patients who request specifically to talk to a physician and only a physician are encouraged to make an appointment so that their situation can be fully evaluated.

On a related topic, do you see such services as American Well and Hello Health as threats to hospitals and health networks in that they will siphon off patients from mainstream brick and mortar institutions? Or are they creating models of participatory healthcare that local hospitals could simply adopt and engage their medical staff in, which might actually help them with staff (and patient) retention given that physicians might be more prone to stay with local hospitals that enable them to spend less time in the office but maintain their practices via Web-based means?

An eVisit service is a helpful trend in medicine but it needs to be in a controlled environment. A secure email or online service which provides communication between a physician and an established patient is the right approach. Using Facebook or less secure tools could violate HIPAA or open up other liabilities to the physician or hospital.

One of your many duties is that of dealing with the needs of the many researchers of the Cleveland Clinic. You mentioned in your talk at Medicine 2.0 that you are on the advisory board of Within3 . Could you tell us why you got interested in this firm and what makes it so promising? Do doctors and clinical researchers need such online gated communities as opposed to the free and easy atmosphere of the science rooms of FriendFeed? Is there anything comparable to Within3? Is that well beyond what Sermo can offer (which, granted, as a rule does not deal with heavy-duty clinical research).

The unique offering of Within3.com is that it provides secure, member only communities for physicians and health professionals around common interests. For instance, a newly launched community for gastroenterologist focused on their annual conference and submitted abstracts. They are also offering these closed communities for advisory boards and clinical trial groups like NCCN. By keeping the membership by invitation only, actual identities are required rather than cryptic account names which are allowed in other social networks. Also, I like to point out the Within3 is a Cleveland-based Health 2.0 startup.

You said in your talk that one of your goals is to expand Twitter presence. Please elaborate. Do you encourage notable researchers to tweet about their activities, for instance? Do you encourage employees to build up individual presences (i.e., personal brands) on Twitter? You yourself on active on Twitter. What are your favorite tools and whom you do consider people who are must reads on Twitter? Lee Aase of the Mayo Clinic? Ed Bennett?

My personal use of Twitter began at the 2008 Medicine 2.0 Congress with a group of interested and active tweeters. It provided the perfect vehicle to continue our conversations after the conference. I expanded my network to include others interested in health 2.0, research, health care reform and healthcare IT. It provides a tool to keep immediately aware of conferences going on around the world, the latest news in these fields and creative ideas like those of ePatient Dave and Jen McCabe of Contagion Health. As a result of Twitter, I actually arranged to meet with Ed Bennett when I was in Baltimore and it has lead to some speaking engagements.

Speaking of the Mayo Clinic, how do the Cleveland Clinic and the Mayo Clinic differ in their Web presences? You are both huge Web operations. What do each of the two organizations excel at? What do you think they do better and what do you think you do better?

Mayo Clinic had an early strategy to separate their health information to MayoClinc.com from its medical practice and hospitals. This has allowed them to leverage it into a for profit venture. We chose to keep our health information integrated with our service offerings. In social media, Mayo Clinic is more active in the use of public blogs and internet radio, while we have focused on our YouTube, Facebook and Twitter presences.

On a related matter, what conferences, professional organizations and fields of study do you recommend for those interested in a career in social media in medicine? Heavy duty computer programming? Marketing? What would you advise a college sophomore interested in the field to major in and what are absolute must skills?

The two most important conferences in health care and social media are Health 2.0 and Medicine 2.0. Almost any marketing conference is now offering content on social media and some independently sponsored conferences are also helpful. I spoke at a Q1 conference in Phoenix earlier this year which was well attended and included many key players.

Do you have experts on your Web design team that examine every aspect of the site with an eye to the revolution in mobile technology?

Yes, our Internet Marketing group has developed standards for web design and continues to look for improvements in usability. They are just beginning to move into mobile technology, the first of these being wellness tools.

Do you see the Health 2.0 and Medicine 2.0 movements as becoming less distinct from one another than they once were?

The Health 2.0 conference continues to focus on startups and entrepreneurs whereas Medicine 2.0 is more focused on academic medicine and research. So I think they remain somewhat distinct.

Finally, who are your heroes in healthcare, technology and in any other field of endeavor?

Dr. C. Martin Harris, our CIO, has provided visionary leadership in the areas of EMRs, PHRs and other online initiatives. Both Matthew Holt who established the Health Care Blog and the Health 2.0 conference and Gunther Eysenbach who edits the Journal of Medical Internet Research and the Medicine 2.0 Congress. But a younger generation of Twitterati are emerging as well including Jen McCabe, Cisco Grajales, Carlos Rizo and Maarten den Braber. Creative, innovative ideas will emerge from this group to lead us into the future.

Thank you for your time, John.

You and I talked on the phone and this interview is a follow on to that chat.

I have worked in a medical library, but I must confess that although I had heard of the TRIP Database, I had not used it in my job. Given the importance of the evidence-based medicine movement, I appear to have been quite remiss in not utilizing the TRIP Database.

Let’s start with the basic terminology of medical search. You use the word “database” in describing TRIP. Now, like most people in the medical library field, my mainstay tool was PubMed, which uses this wording, “The PubMed database comprises more than 19 million citations…” And yet when I did a Google search on the term “PubMed” I also saw such wording as, “PubMed is a free search engine,” “an online US Government index,” “an online library” and so on.

And on the TRIP Database homepage we see the wording, “TRIP Database – Clinical Search Engine…The TRIP Database is a clinical search tool designed to allow health professionals to rapidly identify the highest quality clinical evidence for clinical practice.”

Could you please delineate for us the differences between a search engine, a search tool and an online database and provide examples of each? For example, how would you categorize the grants and scholarship listing I work on ScanGrants? It is a search engine, a database or both? I helped create it and I am not sure what it is! Help!

Unfortunately, I’m not the best person to ask! I imagine there is much overlap between them all and in many ways they could be viewed as synonyms. If they are not strict synonyms, I imagine people use the terms in such a manner.

What does TRIP stand for?

It initially stood for ‘Turning Research Into Practice’ but we dropped that many years ago, simply using the term TRIP.

Could you tell us about your own background and that of your co-founder and co-director, Dr. Chris Price? I note that you started TRIP in 1997. What was the impetus for the creation of TRIP? Was there a defining moment or did you and Dr. Price just feel that clinicians lacked access to the information they needed to provide topnotch care to patients? Could you elaborate on this, “…a chance conversation led to the spreadsheet being converted to a crude web-based search engine?”

I’m a scientist by training and Dr Price is a general practitioner (similar to the American Family Physician). I ended up working for the NHS and was asked to try and improve the uptake of evidence. I spoke to a large number of health professionals and they clearly said they wanted us to answer their clinical questions and not to send them on training in appraisal and searching – they didn’t have enough time. It was as a result of that I started the ATTRACT (Ask Trip To Rapidly Alleviate Confused Thoughts) service which is still going strong. As part of the process of answering the clinical questions I found I went from site to site and each site visit added time to the answering process, so I decided to make a list of all the documents in an excel spreadsheet; recording the title, URL and date. At the same time I was thinking of starting a website for ATTRACT and had a conversation with a man in the office opposite, who was an early web enthusiast. He said he could make the spreadsheet searchable – and he did. The same reason we started the TRIP Database (making clinical Q&A easier) is still going strong and we’re still heavily involved in Q&A (see www.tripanswers.org). We’re even thinking of starting a journal of clinical Q&A.

Can you tell us in what circumstances a PubMed or Medline search are just are not enough? And while you are at it, would you please tell us the difference between PubMed and MEDLINE and how TRIP differs from each?

I think there are important differences. PubMed/Medline are massive databases of – mainly – primary research literature (clinical trials etc). In the world of evidence, primary research is deemed to be less strong/robust compared with secondary evidence. Also, most people searching today are used to searching Google. That approach won’t work with PubMed. TRIP differs in that we allow users to search across a large body of secondary research, primary research and etextbooks. Our aim is to allow users to find answers to their question using the best available evidence. If there is no robust secondary research we’ll return primary research. Also, our aim is to make the search similar to that seen in Google. So, in essence we want to make it as easy as possible for clinicians to find the most robust evidence for their search query.

You say on the TRIP site the following, “The evolution of the TRIP Database has been guided by the desire to answer real clinical questions using the principles of evidence based medicine.” I want to parse that sentence so that I can grasp matters better.

For example, could you give us two real-world examples of “real clinical questions” and why a physician would use TRIP to answer them? For instance, in what scenarios would she be better advised to use PubMed only, TRIP only, or TRIP first or PubMed first? What other online resources (free or otherwise) might she consult in addition to TRIP and PubMed? Do you have any special advice for American users of TRIP (given that you are UK-based)?

Lots to discuss there! I’ve got experience (personally and my teams) in answering over 10,000 real clinical questions. I would always start with a TRIP search and that’s a firm part of the various Q&A methodologies. Say the question was ‘Are statins useful in the elderly?’. A search of TRIP immediately returns a number of high quality, secondary reviews on the topic. Searching PubMed with the obvious search phrase ‘statins elderly’ (as most non-librarians would attempt) yields pretty unhelpful results.

You highlight that we’re based in the UK, around 70% of our usage is from outside the UK and our content is not tied to the UK, far from it. We want good quality evidence from wherever it has been produced. You’ll see from the site that we have 5 separate geographic areas for our guidelines: USA, Canada, UK, Australia & New Zealand and ‘Other.’

Let’s talk about evidence-based medicine. In the age of Obama, we hear a lot about the US government’s drive for “comparative effectiveness” to be taken into account in the practice of medicine. Could you please tell us how comparative effectiveness differs from evidence-based medicine or are they, in effect, synonymous? Do you forecast the Obama administration’s emphasis on comparative effectiveness increasing utilization of TRIP by American medical providers?

As I mentioned above I’m not the best person to ask about definitions. They may not be strict synonyms, but here is the definition of comparative effectiveness in Wikipedia :

As for increasing traffic, it might well do so. As it happens, the USA already counts as our top country for traffic (tied with the UK).

You say on your site, “TRIP remains the internet’s leading resource for evidence based medicine.” What are other such resources? Please list some as well as their strengths and weaknesses. Have any of them, for instance, come along in the last year or so? And do they identify themselves as search engines, as databases or as both?

There are lots of search engines that have come along in the recent years. The barrier to entry is quiet low (compared to 5+ years ago). To be honest I don’t spend too long on these other sites, so am not really in a position to comment.

You also say, “TRIP have recently created an advisory board with wide representation.” Who is on it and from what fields and nations do they come?

I hope this doesn’t appear too evasive, but I’d prefer not to name names. Principally as we’ve never really discussed terms of reference and I’m not sure if I have people’s permission to name them! However, I would say that the vast majority are not ‘big’ names that people would recognize. We just have a group of around 70 people who I can turn to seek advice on various issues. There’s an even split between health professionals and information specialists. Geographically, they come from all over the world e.g. UK, USA, Mexico, Argentina, NZ, Australia, Germany, Spain, Peru.

Let’s talk about user feedback. You say, “We receive, and welcome, feedback from users asking about features they’d like to see…” and I was pleased that during our phone conversation you listened to my suggestion that users of TRIP be able to set their search parameters by date, given that users want to be able to search for items dating, say, from the last two years, last year and so on. You said that that feature is in the works for the next upgrade. Could you tell us when that upgrade will be announced and what we might look for in it? Can you give examples of who wants what upgrades and how you prioritize such requests? For example, do certain medical specialties want certain features? Do medical librarians ask for such and such whereas nurses (are they big TRIP users?) want this and that?

The main inputs for change come from two main places. Firstly, there are ideas I generate myself and these tend to come from using the site to answer questions or seeing what mainstream search engines are doing. Secondly, feedback from users. This latter group is essential as it gives a different perspective – so we love hearing feedback/constructive criticism.

In addition we’re re-writing TRIP Answers and releasing a lot of self-test education based on our repository of Q&As. This latter feature allows a user to select any question, record what they think the answer is, we then show them our answer and then they comment. This sort of learning (reflective learning) is deemed highly educational and is a component of education in the UK setting.

Can you tell us how TRIP is financed? You say, “We have an exclusive advertising deal with eHealthcare Solutions.” The ads on TRIP seem unobtrusive. Is advertising your primary source of income or do you receive support from the UK’s National Health Service? From foundations? Are you an employee of the NHS?

TRIP is trying to diversify its income streams and have been moderately successful in this aspect. However, we always have more ideas than money, which is frustrating. But the main income streams are as follows:

As for myself, I still work 2 days per week for the NHS.

One feature I found interesting in TRIP is your openness to other search tools. For example, I tried in TRIP my favorite search term, amyotrophic lateral sclerosis, and saw at the bottom of the page, “Not found what you’re looking for? TRIP might not have the answer, but these other sites may…” and you list SumSearch and Google. I am not familiar with SumSearch. Please tell us a little about it.

I’m very keen for users to find what they’re looking for. I believe it’s arrogant to believe that my site (or indeed any site) will answer all the questions users have. So, why not plug in some tools to help users if TRIP ‘fails’. I’ve known Bob Badgett (the associate professor responsible for SumSearch) for a number of years. We’re both interested in the same thing and have approached the problem it in different ways. Bob’s approach is to use contingency searching in that he’s automatically tweak searches to return only a modest number of results. I’m not an expert of SumSearch so best to look at the site for yourselves and read this ‘proper’ explanation.

As for incorporating additional search features. I have no plans at present, but if a particular tool is highlighted that can bring significant extra benefit to TRIP (well, TRIP users) then I’d be keen to add it.

And given your willingness to feature other search tools (like SumSearch) does TRIP have any plans to partner with other health-related or research search tools such as Mednar or DeepDyve?

And speaking of DeepDyve, they have some pretty neat widgets and you offer one of your own:

Or would you even classify that as a widget? Indeed, let’s talk about the adoption of widgets in the healthcare industry and in the world of medical libraries. Many medical libraries are setting up intranet-based pages at their institutions as well as public Web sites for the use of those of their patrons who happen that point to be outside the firewalled institutional electronic environment and who are always offsite. Many medical libraries are also setting up sites primarily designed for use by the general public. And it is not just medical libraries that are doing so, but marketing departments at community hospitals or major medical institutions as well. Could you tell us who has placed a TRIP search box on their sites and who might benefit by doing so? For example, there are quite a few bloggers on the subject of medicine and health. Would they regard your widget as a nifty freebie offering to visitors to their sites? How would that work, exactly?

We don’t keep track of who has the widget! An example of it being used can be seen here.

As for installation, it’s relatively straightforward (and we can advise) in that we supply a few lines of HTML code and they user needs to add that to their site. This is very easy for blogs but a bit more complex for traditional websites.

Let’s talk about the rise of social networking and social media and how they have overshadowed the once hot topic of search. How is TRIP adapting to and leveraging the power of social computing? Could you tell us about doc2doc, for instance and your relationship with the BMJ Group (itself a fascinating example of a mainstream medical publishing firm embracing the power of the Web for the dissemination of its offerings and engaging users fruitfully).

It’s an interesting topic and the future in medicine is difficult (for me) to predict. Our particular doc2doc tie-in will be launched properly in the near future. Again, it comes back to our desire to help users find the information they need. If TRIP fails they can try SumSearch, but they’ll also (if they’re a health professional) be able to ask clinical colleagues on doc2doc if they can help. We’re hoping the relationship will be mutually beneficial.

Aside from doc2doc we’re starting to examine the potential for a social aspect to TRIP. This has been fuelled by the large numbers of people signing-up to My-TRIP (a free feature that gives extra benefits to users e.g. auto-searching, recording activity etc.). We’re currently at 1,300+ after just two weeks. Each person records a profession, a country and clinical interests. As I see these people joining I see connections. These connections are either professional (e.g. nurse to nurse), interests (e.g. oncology to oncology) or geographic (e.g. USA to USA). I think we could do some interesting things in this area. However, the lack of funds will mean we can’t rush into this space. But, I (supported by the advisory board and others) will continue to work on ideas and see what happens.

And still on the subject of Web 2.0, I notice that under Sources searched by TRIP you list wikis, Webcasts and podcasts. (But not blogs so far?) Is that something unique to TRIP in the world of medical search and what do you see as the promise and challenges for databases of such new genres as online video journals like the Journal of Visualized Experiments (JoVE)?

Actually, we now search three blogs and we’re pleased to have taken the step. I’m sure we’ll add new blogs in the near future.

As for videos, our system can handle them and we had planned to roll out a video search. Unfortunately, we do not have the resource at this stage. That aside, the challenge with video search is for a user to locate an appropriate video. The only searchable aspect is the title which is problematic. For example the title of a video might be ‘Pharmaceutical approaches to diabetes’ and this might include a significant discussion on metformin. A user searching for metformin and diabetes would not find that video!

You include images among your search results. Is that also something that sets you apart from other medical databases? Where do you get those images and how do you determine their worth for your users?

Our medical images are a work in progress! It certainly does separate us from other clinical search tools. Medicine can be very visual, most obviously in dermatology. In the case of dermatology, if you’re unsure of a diagnosis it’s helpful to be able to see examples of things like rashes! Aside from dermatology, it can be useful to see examples of CT-scans, x-rays etc.

We created a bespoke spidering system to grab content from medical image sites that we’re aware of e.g. hardin.md. Currently, we’ve got a lot of images, not all of which are appropriate (e.g. they may be part of a banner) so we’re gradually editing the image collection to improve the quality.

Do you think that in some ways, given the rise of Open Science and the microcontent and preprint cultures, publication in journals as we now know them is becoming almost an afterthought or even unnecessary? How do you see projects such as Elsevier’s Article of the Future affecting the world of medical search and clinical research generally? Will such things leave frontline clinicians mostly untouched or will even a family doctor have to cope with the fact that articles will become fluid, ever-changing entities?

Unfortunately, this is a topic I’m not overly familiar with. Knowledge in medicine is already fluid, in that new research, advice affects the knowledge base on a regular basis. One issue is the speed this diffuses to clinicians. Will this improve things, I’ve no idea!

When we spoke on the phone, you spoke quite passionately and feelingly about TRIP’s relationship with HIFA2015 and mentioned a rather fascinating idea you are toying with of offering a button on TRIP that would enable those conducting searches to fairly painlessly add an article to a database of medical literature specifically designed to be of use to those providing medical care in resource-poor settings, specifically in the developing world. Now, that is an excellent idea in many ways (although I would say that when I do a search I really don’t have the time to think about poor countries and what their particular needs and resources might be—I am just trying to get my work done in an industrialized country and help those in my immediate orbit). Is there a term for this sort of thing? Altruistic searching, maybe? Has it been adopted anywhere else?

I’m excited by this idea as – if it works – it’s an easy model for others to adopt. Basically, we want to crowdsource the identification of content suitable for resource poor settings. TRIP has lots of such content, but it is ‘hidden’ by the ‘noise’ of articles based on setting such as the UK and USA. So, a user from the developing world (with bandwidth issues) may need to wade through content which is good evidence, but not applicable in their setting. If even a small number of users start ‘tagging’ content suitable for such settings it’ll allow users to restrict their search to content ‘suitable for resource poor settings’ – making a very focused search. The old adage about user participation on the web is that 90% of people will not interact with a site, 9% will do so occasionally while 1% will do so actively. We currently get around 35,000 visits per day, so 1% is 350 people per day potentially tagging articles. It’s certainly not for everyone, but the cause is ‘just’ so I think people will be inclined to get involved.

As for a name, altruistic searching might work, a quick Google shows terms such as Crowdsourcing Philanthropy and Crowdsourcing Altruism! The notion of crowdsourcing altruism was seen when Steve Fossett went missing. In this situation very recent maps of the area where he may have disappeared were added to the web in bite-sized pieces (I think it equated to 10m x 10m of land) and users were asked to look for plane wreckage and click if the area was ‘clear’ or not. It never found the plane (as far as I’m aware) but did locate a number of other planes that had gone missing over the years!

What is CPD and what is its value?

CPD is continuing professional development. It’s dawning on me that this is a very UK-focussed term and I should use a different term. In the UK (and other countries) there is a requirement for health professionals to stay up to date with the latest evidence, this is a key component of CPD. It’s value is that if a clinician can’t demonstrate they’re keeping up to date it could affect their ability to practice. TRIP has released a way for clinicians to easily record what they’re looking at and also to assign reflective notes to a particular article. These reflections are aided by three guide questions:

We’d like to use this approach for the USA but it’s an area I struggle to understand. In other words, in the USA is this approach deemed appropriate CME!?

Let’s talk Twitter. You say on your blog:

“We’ll be working on a mechanism to link TRIP in with Twitter.” How would that work?

This may or may not go ahead. Basically, each month we add lots of great content onto TRIP. So we thought we could drop topic specific content as a twitter feed. In my mind you might follow a broad area e.g. cardiology or specific e.g. cholesterol. As new content is added to TRIP we’d tweet it. It’s another way of people keeping up to date.

And still on the topic of Twitter, whom do you follow on it and what are some of your favorite Twitter tools?

I use tweetdeck which is wonderful. I follow around 250 people and these can be seen here .

You are considering adding a search wizard. Why? And how would it work?

This is another ‘wish list’ item. Currently, most searches on TRIP are single term, which is often problematic (search term vague = vague results). The search wizard would attempt to walk people through their clinical questions/scenario to unpick the important elements. We’d then use a modified version of the search to return a small number of results. Theoretically great, but in practice – we’ll see!

You also say, “Semantic analysis. We’re working hard to bring a semantic analysis function (a similar principle is used in PubMed’s related articles feature).” Would this resemble DeepDyve’s More Like This tool, which is pretty slick and could you do something like their Content Highlight tool

I discussed the related articles function earlier in the interview. I was not aware of deepdyve, but yes it’s a similar approach and that ‘more like this’ tool is relatively straightforward to set-up.

How do you see TRIP in a year? In five?

My primary aim is to make sure TRIP’s financial base is secure and we’re pretty confident. We get approached fairly regularly (1-2 times per year) from people wishing to invest. So we may take advantage of this one day. But aside from stability I want to keep developing TRIP to make it easy to use for clinicians and to ensure it serves their purposes. If they have a clinical question I want TRIP to answer it. Longer-term I’d like to see TRIP adopt a social aspect, some form of community and that can only make us stronger. Ultimately, I would like us to be even more widely used and still innovating.

What groups are not using it that you think really should be and why? Can you give a breakdown on usage numbers in terms of total traffic and by profession and specialty?

Who should use TRIP? Anyone who wants to locate robust research evidence to support their clinical practice! TRIP has been specifically designed for this function and it does it pretty well!

As mentioned earlier we get around 30-35,000 visits per day. Around 30% are from the UK and a similar number from the USA. The rest of the traffic comes from English-language countries (e.g. Australia, New Zealand and Canada, with India seeing a surge) also we get lots of traffic from Spain and South America. As for professions, 70% health professionals 30% non-health professionals. Of the 70% around 35% are physicians. As for specialties, we’ve no real idea. However, we are capturing this via My-TRIP so that’ll start giving us some decent statistics in the near future.

What aspect of TRIP are you most proud of and what has been your greatest challenge or frustration with it?

I’m most proud that we’ve managed to create a cutting-edge product that large numbers of people use to locate evidence to support their practice.
In other words we are helping to Turn Research Into Practice.

The challenge/frustration is one of funding. Being independent is great, but it has drawbacks. The NHS search (NHS Evidence) has £15 million funding a year while we operate on a lot less than 1% of that! We want to innovate, have lots of great ideas but not always the money to implement them.

Finally, who are your personal heroes in science, medicine, search, technology and in other field?

I’m not particularly into heroes as such. However, there are people I admire a great deal and have helped me directly or indirectly. To name a few I’d go for Noam Chomsky, Paul Glasziou (Centre for Evidence-Based Medicine, Oxford) and Muir Gray .

Thank you for your time.

It’s been a thought-provoking pleasure.

There has been a lot of discussion about the e-patient movement (embodied by e-Patient Dave, who is increasingly listened to by those of us who follow the Health 2.0 and Medicine 2.0 movements) and we seen the founding of the Society for Participatory Medicine and the launch of its periodical, the Journal of Participatory Medicine.

And we have seen news stories lauding the success of the online patient community, PatientsLikeMe and have read useful white papers such Kevin Kruse’s Patients Rising: How to Reach Empowered, Digital Health Consumers.

And yet, interestingly, amidst all the talk of the rise of online health we have also seen the closure of several online patient communities/social networking health sites. Trusera is one of those that shut down.

This brings me to you and MedHelp . You and I both attended the 2008 and 2009 Health 2.0 conferences. What strikes me most strongly was how much buzz there had been at the 2008 meeting about online patient communities and how that topic had pretty well disappeared by 2009 save for the predictable presence of one of the two Heywood brothers of PatientsLikeMe—in 2009 it was Jamie. In 2008, Ben. You and MedHelp were one of the few online health communities represented at the 2009 gathering as both presenter and in a booth in the exhibition hall. At the 2009 meeting, there was much more discussion of hardcore healthcare IT matters such as electronic medical records and of online health, represented by such services as American Well and Hello Health as well as the usual contingent of VIPS from Google Health and Microsoft HealthVault and coverage of various health tracking tools such as The Carrot.

But the online patient communities have fallen by the wayside for the most part. Rather to my own chagrin, as someone who worked in a medical library and who had urged medical librarians to make themselves aware of the increasing amount of health information seeking by consumers at online patient communities and what had appeared to be the increasing occurrence of such material in Google search results on queries on health-related topics, it appears that I grossly misjudged the staying power of such phenomena. I am turning to you as an expert and hardy survivor of the devastation in the commercial online patient community sector for your insights into what happened and soliciting your views as to the future of patient social networking.

I chatted with you at Health 2.0 2009 and was fascinated by what you had to say and I think your comments would make for valuable reading by those interested in the e-patient movement, healthcare marketing and anyone who works in healthcare (e.g., physicians, nurses, pharmacists, public health workers and social workers) as well as health economists and sociologists. And consumers of healthcare—which is the vast majority of the population.

Let’s start with the matter of terminology. I noticed in an email you wrote me that you used the term “online health community.” I just did a quick Google search on PatientsLikeMe, Trusera and OrganizedWisdom and saw such terms as “community-based personalized medicine platform,” “health-focused social networking sites,” “health 2.0 community,” and Web-based social network.” I usually use the term “online patient communities.” Can you help me out here? Is there any standard term? Why do you use the term “online health community?” And what make a “community?” For example, at Health 2.0 2009 Wayne Gattinella, President and CEO of WebMD, was of the panelists in the session, The Consumer Aggregators. But he objected to the term “aggregator.” And yet WebMD offers not only health news and tips but also communities (which it also labels simply “discussion boards” and “support groups.”) They seem pretty limited in functionality and features compared to the quite sophisticated Web 2.0 look of PatientsLikeMe. Could you please outline for us what you would consider a true online health community?

There is no standard terminology in part because each of the offerings is different. For us the term online health communities captures our communities well. They are online (including mobile) communities where people can connect with doctors (or other experts) or with others that share their health interests. Our site helps patients as well as those looking to stay healthy. In addition to communities we provide PHRs and the applications to manage your health.

Getting back to WebMD, how would you differentiate MedHelp from it? For example, I have just been poking around WebMD and came across this notice:

“Olivia_WebMD_Staff
Community Growth Update
Posted: Oct 09, 2009

Dear Members,

We recently announced that your WebMD Community is going to be expanding soon.

Here are some of the new offerings that are on the horizon:
• Create your own public and private spaces to connect with others.
• Easily keep up with discussions that interest you.
• Create your own polls.
• Quickly and easily share tips and resources with other members.
• Create individual profiles for each topic you join
• Get MORE feedback from high-level health experts.

We can’t wait to share these wonderful new community additions with all of you!

Be sure to direct any questions, comments, or concerns to us at webmdcommunity@webmd.net.

Your WebMD Community Management Team”

That still sounds a little on the unexciting side. But it is interesting that WebMD wants to expand rather than eliminate the communities. And speaking of the matter of the elimination of communities on consumer health sites, I must say I was impressed with your wealth of knowledge about your now defunct competitors in the online health community space. I am going to throw some names at you and ask you what you know of the status of each site in general (closed down or thriving) and what the status of each says about the state of online patient communities: RightHealth, Healia, Revolution Health, HopeCube and MDJunction.

WedMD does a great job of providing medical information. Our key differentiation is our focus on personalized health information. We have learned that once people learn about the condition they usually have a lot of personalized questions e.g. how does a condition relate to me because I am pregnant and diabetic. That’s where we specialize. We have the world’s largest online communities and so you can find people who share your concerns no matter how rare they are. In addition, if you want to ask and expert a question you can ask one of the 200 doctors and experts on our site. We also provide you with the tools to track and manage your health. For example, if you are trying to conceive our ovulation tool will help predict when you are ovulating. Our tools can also be shared with your doctor to help improve the quality of care you receive. So it is our focus on personalized health information that sets us apart.

One of the things I found really fascinating and that was not really commented on at Health 2.0 2009 was the way OrganizedWisdom is now downplaying the role of non-medical people in the creation of its Wisdom Cards and how much OrganizedWisdom’s Co-founder and CEO Steven Krein kept using the word, “physician” as if he wanted to envelop OrganizedWisdom in the fold of orthodox medicine and medical authority. That was quite a switch from last year when the patient was all and the medical establishment was something that a savvy consumer consulted only after educating herself at OrganizedWisdom and immersing herself in WisdomCards.

MedHelp, by contrast, has extensive relationships with some of the leading medical centers in the country. Could you comment on this about face of OrganizedWisdom and how it now seems to be marketing itself more as a destination site for health search than as a health community? It seems to be having something of an identity crisis. To wit, it offers neither the ties to the medical community that MedHelp offers nor does it seem to have the wealth of resources that consumer health sites such as RightHealth and Healthline do—let alone the free and authoritative MedlinePlus of the National Library of Medicine.

What do you see as the future for OrganizedWisdom? In a way, has the rise of the e-patient movement actually hurt the online patient community sites in that as more and more health information becomes available consumers have come to regard the information on sites like OrganizedWisdom and comments by fellow users of sites such as the now closed Trusera as of little value compared to what they can get from recognized institutions that have extensive online offerings such as the Mayo Clinic .

I think Organized Wisdom will continue to evolve until they find their niche in health. For now, Organized Wisdom is now focused on the physician and it is ironic that PatientsLikeMe says they will never have a physician on their site. At MedHelp we see the value in both. Patients can learn from each other and from doctors, and, doctors can also learn from patients. We have had articles published by doctors based on insights they gained from answering patients questions on our site.

Let’s now turn to your own site, MedHelp. One thing that sets you apart from sites like OrganizedWisdom, which was founded in 2006, is that MedHelp has been chugging along nicely since 1994. Could you please comment on how it has managed to survive both the dotcom bust of 2000-2001 and the troubles that its peers have failed to overcome in the last two years? What accounts for your longevity?

The key to our longevity is delivering real value to our users. We don’t buy any traffic to MedHelp and so we focus on delivering understanding and meeting the needs of those that come to our site. We have spent time on each condition and have built the necessary communities and applications, and partnered with the doctors and hospitals to support it. We have found that by doing a good job of meeting the needs of our users they back and tell others about us.

Please tell us about your affiliations with a pretty impressive roster of institutions and organizations (e.g., Johns Hopkins, the Cleveland Clinic, Mount Sinai). That is quite different from PatientsLikeMe which has a resident neuroscientist on staff and a nurse, but otherwise is very much a user-generated content site. Could you please discuss the relative importance to your users of such ready access to medical experts and do you see a threat to online patient communities in the rise of actual online health care such as via American Well and Hello Health or might the rise of online healthcare actually help sites like MedHelp and WebMD in that users could consult sites like MedHelp and get a basic medical opinion from one of your resident experts on a discussion board/in a forum and if that medical professional suggests that the patient get actual care the user could simply then bop over to American Well and consult a physician within minutes via video hookup, phone or other fairly immediate means? Do you have any plans to partner with American Well in this fashion? Alternatively, do you see MedHelp as getting into the online healthcare space by leveraging your existing relationships with Johns Hopkins, Mount Sinai etc. to create a service much like that of American Well? MedHelp does not seem to offer direct email access to the providers who host the forums. Do you foresee bumping up, if not to the American Well video model, as least upgrading to something akin to the Cleveland Clinic’s (which MedHelp is already affiliated with) Remote Second Opinion Service?

Providing our users with access to the best doctors and hospitals has always been very important. We have partnerships with most of the top hospitals such as Cleveland Clinic, Partners Healthcare, Johns Hopkins, Mount Sinai, National Jewish, etc. We have had some of these partnerships for over a decade. Users can ask our doctors questions on our site and if they want a more detailed review then we work with the second opinion services from our partners such as Cleveland Clinic and Partners Healthcare. We also provide health chats where a doctor communicates in real-time with users around a specific condition. It would be hard to provide one-on-one real-time access to the physicians at these top hospitals but we will continue to work with them to provide for the best experience for the physicians and the users.

One thing I noticed as I browsed through the entries in MedHelp’s ALS community is that many of the posts tended not to be by people who have been confirmed to have ALS and who are longtime members of the community (as is the case, for the most part, with the ALS community on PatientsLikeMe), but people who are experiencing worrying symptoms and fear that they may have ALS

Does MedHelp, thus, serve a different niche than does PatientsLikeMe (i.e. the worried and possibly ill as opposed to the longtime chronically ill of PatientsLikeMe)?

Speaking of PatientsLikeMe, as much as I admire the Heywoods, it does seem that they are so much liked as speakers and respected as figures of note in Health 2.0 and e-health circles they don’t tend to be asked tough questions like their burn rate. Do you think that PatientsLikeMe really merits its positive press? After all, don’t MedHelp and patient support groups such as ACOR have many times the number of users? Could you please provide a few numbers so as to put things into perspective? You say on your homepage, for instance, “Monthly visitors: 9.0 million.” Can you elaborate on that? How does it compare to WebMD?

According to the US ComScore numbers, WebMD has 18.4 mm uniques and MedHelp has 5.6mm. That makes WebMD 3.3 times larger than MedHelp.

However, our health communities are by far the largest and we have the largest offering of consumer health applications.

Could you please discuss your business model? MedHelp features some pretty straightforward advertising on its site. Is that perhaps better for users vis-à-vis transparency than the rather opaque finances of PatientsLikeMe? (To its credit, PatientsLikeMe does make clear that it has relationships with pharmaceutical companies.)

Yes we have advertising which is very transparent to our users. In addition, it is important to be profitable in order to be able to keep our services free and be able to serve our users for years to come. I cannot comment on how PatientsLikeMe makes money as I don’t really understand it.

How do you differ most notably from WebMD? I noticed, for instance, that you both now offer advice on pet care and that you both offer personal health records. Do you every worry about trying to do appeal to many audiences and diluting the focus on healthcare?

We were one of the first to offer Pet Health and have been offering it on our site for a few years. It was a result of discussions with our users who expressed how important it was to them. In fact, we spoke to a user who skipped buying their own medications so that she could afford to buy medications for her pet. As a result we created the Pet Health communities and got Veterinarians and Behaviorists to help answer their questions. It grew from there to people using the PHRs to track their pets’ health information. We are now working with our users to take it to the next level.

Was it a hard decision to begin to offer personal health records or is that now becoming an expected feature of any consumer health site? What are particular concerns when offering that service?

Offering a PHR was a natural extension of our health applications. People were tracking various aspects of their health using our tools and wanted to including all that data in their PHR. So we combined the two to create an iPHR (intelligent PHR). The iPHR provides you with the tools to actively manage your health.

How you do see MedHelp in a year? In five?

The people who use our site are very passionate and we will continue to innovate to deliver better personalized health information. We will continue to expand our communities, work with doctors across more specialties, and increase the range of health applications we provide. We would also like to do more internationally to help serve other parts of the world.

Finally, who are your heroes in healthcare, technology, business and in any other field?

My heroes in life are my parents. I was born in Ethiopia and our family left during a difficult revolution. After leaving Ethiopia we moved around the globe and as we grew up we went through different circumstances. We experienced both times when we could offer help and support and times when we needed it from others. Through all of this my parents managed to keep my four siblings and me safe and healthy, they managed to instill in us values that I treasure till today, and they provided us with an education that opened the doors to the world for us. What they achieved continues to inspire and guide me through life.

Thank you for your trouble.