I am incredibly impressed with the caliber of the speakers and attendees. It is really a privilege to get to meet and mingle with those in the genetics, rare disease and advocacy communities.

I came to give a talk on Web site design and had as a slide what I called, “The Perfect Grant Announcement” given that it had everything that those looking for funding in research like to see immediately. To wit, the amount of the award, the deadline for applications, the purpose of the grant, in this case, “The organization is currently soliciting grant applications for funding of research projects focused on the pathophysiology or treatment of Erdheim-Chester Disease.” I had rushed to enter the announcement on ScanGrants.

And it was such a delight during my talk to have the very person responsible for offering the grant pipe up, “Oh, that is ours” said Kathy Brewer ECD Global Alliance, President.

Please tweet and blog about that opportunity. It is not often that $50,000 is on offer (note the application deadline of August 11, 2010) for research on a fascinating medical mystery.

This is the kind of interaction that happens at the Genetic Alliance Annual Conference. Here we have dedicated people at a foundation devoting themselves to helping researchers prevent or cure disease and doing all they can to reach out to scientists and physician researchers.

And it is not only in the actual sessions that one meets people doing important work. In the hall I met Janet Braga who is the project manager for the upcoming national conference, Genetic Diseases of Children: Advancing Research & Care, which I immediately entered into ResearchRaven when I got back to my room as it is just the kind of gathering that we like to feature on ResearchRaven (and please feel me to send me details of any similar meetings you are holding for possible listing on it): an announcement of a medical meeting on an important topic that encompasses so many issues: child health, public health, genetics, screening tests, preventive medicine. I often spend many hours working in relative silence on ScanGrants and ResearchRaven and it has been a heartwarming experience to actually meet people like Kathy and Janet, both of whom are employing their talents to bring together researchers for the betterment of humanity and the advancement of medical researchers. Not a bad way to spend one’s life.

And I got to meet chat with two men with whom I will speak in a session later this morning (maybe I will be able to get back to sleep after posting this and so not be a total wreck by the time we present) called Science 2.0, Medicine 2.0, Health 2.0, and Open Science: The Revolution is Now.

I had met Robert Shelton, the founder and CEO of Private Access, before and have long been impressed by his prescience and vision in perfecting software products that manage the difficult feat of ensuring patient privacy while facilitating the research process. It is indeed almost uncanny that Private Access has in place a suite of tools that is so well suited to the Obama administration’s emphasis on ensuring patient privacy and security of health information.

I learned about that initiative by chatting with my fellow presenter in the Science 2.0 session, Brent Gendleman, President and CEO of 5AM Solutions, Inc. (and how appropriate that I am writing about him at just about that time of day!). He seems to me to possess many of the qualities I like in Robert. They are both entrepreneurs but not simply out to make a buck but to employ their technical and managerial skills to truly make the research process more efficient and thereby save time and money—admirable goals. And the blog of 5AM Solutions is that rarity—a corporate blog that is actually interesting, thoughtful and well written and indeed rather moving.

For example, in one post Gendleman discourses on matters that mesh with much of what is being stressed at the Genetic Alliance Conference:

* we are discovering more about how genes relate to disease

* we are able to produce volumes of data dramatically faster and cheaper than even wildly imagined 10 years ago

* we are not equipped to understand, interpret and apply knowledge from the data explosion as effectively as we would like.

I am very privileged to have gotten the chance to meet such a variety of people here at the conference. Kudos to Sharon Terry, President and CEO of the Genetic Alliance, for organizing this remarkable gathering. One aspect of it that I find particularly inspiring is the esprit de corps of the Genetic Alliance staff. Rarely does one come across such a uniformly friendly, capable, endlessly patient, talented group of people so solicitous of the needs of conference attendees. Talk about gracious hospitality galore. Terry sets the tone and if I had a son or daughter studying the health sciences I would say, “Go try to get an internship at the Genetic Alliance! You will be mentored and nurtured by some of the most effective health policy advocates and experts in the world. Go, for it!” Terry herself could not be a better role model of accomplishment and impact.

Finally, I was able to participate in Genetics Day on the Hill and visited congressional offices with a group of my fellow northwesterners to discuss genetic testing oversight, public access to federally-funded research results, and public engagement in clinical research. As an Oregonian, I was proud of the quality of the aides we met with in the offices of Senators Ron Wyden and Jeff Merkley and Representatives Kurt Schrader and David Wu. The staffers were polite, well versed in the issues, listened to what we had to say, took careful notes and were altogether personable and likable and I am grateful to the Genetic Alliance for making me feel that public servants are not scoundrels of the rankest sort but decent people dedicated to policy making in the public interest. And I certainly learned a lot from the others in my group who included Liz Horn, the director of the Genetic Alliance BioBank, Susan Trinidad, a bioethicist from the University of Washington, and Dean & Teryn Suhr of the MLD Foundation.

It is amazing how much medical research is funded by foundations created by the family members of those with serious conditions and I was very impressed by the dedication and knowledge of the Suhrs on the range of issues covered at this conference. They, like many others in the disease advocacy community, sang the praises of the Genetic Alliance and I can very see why, given what a range of expertise it offers to those interested in matters of rare disorders, public policy on matters of patient privacy, health technologies, bioethics, genetic matters and a host of related issues. It functions as a clearinghouse, think tank, training ground for bright young minds in the health sciences, and skillful crafter of strategies for advancing medical research in a reasoned, calm and persuasive fashion.  And runs a biobank and…

I loved someone with ALS who died recently. I am very grateful that there are people like Sharon Terry in the world who manage to be both personally charming and tireless in fighting the good fight for better ways to get things done in the world of medical research. I am so glad I came to this conference. And as I have yet to proofread this post, I don’t think I am going to get that last bit of sleep in before heading off for another day of it.

During our chat (which came about via the gentlemanly assistance of Walter Jessen) Sol mentioned that his brother Abe Lederman of Deep Web Technologies was working in conjunction with the Office of Scientific & Technical Information (OSTI) of the U. S. Department of Energy, Microsoft Research and others on what has recently launched as Multilingual WorldWideScience, which Abe discusses here.

Now I care deeply about the Open Science, Open Access and Open Data movements and I have been a bit puzzled by the low profile of search in much of the discussion of those movements. As interest grows among funders of medical research (note the presence of representatives of disease advocacy groups, philanthropists, entrepreneurs and government officials among the presenters of the upcoming Open Science Summit 2010) in the growth of Open Science and given that they might start making their support of researchers conditional on the agreement of grantees to conduct their research according to the tenets of Open Science whenever possible or at the least to agree upfront to deposit all of their results in PubMed Central or other public repositories there is going to be an explosion in the amount of data and medical literature that is going to have to be searched.

And given that the Obama administration is very strongly in favor of rendering as much of the vast store of government data and results of government-financed research as accessible to the general public and scientific community as possible (see the PDFs of much of this discussion of earlier this year here) search is going to become ever more crucial—and not just with American material. As China and countries such as Brazil and Turkey take off economically their scientific contributions will grow as well. And much of that wealth of knowledge is not in English.

That is why I found the slide show Multilingual WorldWideScience: Accelerating Discovery through Multilingual Translations by the director of  OSTI, Walter L. Warnick, surprisingly moving, inspiring and not at all dry.

As someone who grew up in a family that housed students who had left home and family in China, Japan, Iran, Korea and other countries to study engineering, chemistry, physics, biochemistry and so on at Oregon State University here in my hometown of Corvallis, Oregon I know what brilliant people there are in many countries who have so much to offer and what a boon it will be that the work of researchers worldwide will become useable to each of them and benefit the rest of us.

Dr. Warnick makes some simple but important points.

For example, he says in his slideshow,

Corollary 1:  Scientific discovery can be accelerated by accelerating access to worldwide scientific information.

The case for WorldWideScience.org.

Corollary 2:  Multilingual translations of science will further accelerate scientific discovery.

The case for Multilingual WorldWideScience.org

I have recently lost a friend to amyotrophic lateral sclerosis and I would often sadly reflect as I bicycled home from her house about the glacial pace of progress on research on that disease and others like it. That is why I find Dr. Warnick’s enthusiasm and practical accomplishments so very admirable and the best possible case for paying one’s taxes with a minimal amount of grumbling. He is putting federal funds to exemplary use.

Dr. Warnick talks of “The “Accelerating” Power of WorldWideScience.org” and goes on to discuss problems that are now being addressed:

Overcoming the researcher’s practical limitations:

Not knowing “what’s out there.” (examples:  Korean medical journals, Australian Antarctic data, South African scientific research database)

Inadequate time to search scientific databases one by one. (examples:  UK PubMed Central, Ginsparg’s arXiv.org)

Inability to sort compiled results by relevance.

By filling these gaps, WorldWideScience.org has accelerated access to scientific information.

He adds,

To further accelerate access to science, multilingual translations are needed in both directions

Translation of English content for non-English speakers and translation of non-English content for English speakers

He concludes, “With the launch of Multilingual WorldWideScience.org, we are . . .

Opening vast reservoirs of heretofore under-utilized scientific knowledge

Providing equal access to science for anyone on the Internet

Promoting scientific collaboration, participation, and transparency

. . . and accelerating scientific discovery!”

Not a bad day’s work!

Kudos to all involved in Multilingual WorldWideScience. This is a real model of government-industry and international cooperation and a major contribution to the advancement of science and the betterment of the human condition. Sorry for getting so misty-eyed, but this really is a stupendous achievement.

As the many worlds of Open Science, Open Access, Open Research and Research 2.0 (check out the  superb slideshow Virtual Research Networks: Towards Research 2.0 for insights into how much of this data is being generated) develop Multilingual WorldWideScience will be there to make all of this activity quite literally intelligible to anyone with an Internet connection.

This is all quite fascinating for those interested in how publishers are faring in a rapidly changing online world in which both the public and policymakers are scrutinizing the existing cozy, rigid realm of sci/tech and medical publishing and not liking what they see.

I have written about DeepDyve’s innovative “Research. Rent. Read.” model before and have since then chatted on the phone with DeepDyve’s CEO, William Park. I had been planning to write about DeepDyve’s interesting alliance with CiteULike but wanted to first attend ScienceOnline2010 because I knew that there was to be a session there called, “Online Reference Managers”
and that one of the firms to be discussed at it was to be CiteULike.

And here I am going to digress into matters of nomenclature. CiteULike itself uses the wording, “free service for managing and discovering scholarly references” and “scholarly bookmarking services,” whereas at ScienceOnline2010 we saw the wording, “Reference managers, sometimes called citation managers or bibliography managers, help you keep, organize, and re-use citation information.”

Soooo, take your pick. I think I am going to stick with social bookmarking as that seems the most common term, and it is easier for me to type the word “social” than the word “scholarly.”

In any case, I am glad that I attended that session at ScienceOnline (and if I were a vendor or startup that had anything to do with software in the sciences I would send a huge contingent to next year’s conference, as there will be many opportunities there to get a feel for products that the online science community needs) because it gave me a better handle on social bookmarking in the sciences. Oh, rats—maybe I should have stuck with the term scholarly bookmarking. So many words for the same thing.

I am actually somewhat grateful for my sloth since then and for not having written about the CiteULike-DeepDyve alliance (which is not a partnership per se, as far as I can tell) because there have been several developments at DeepDyve in the interval that I can now discuss in this one post, having finally roused myself to a state of modest activity.

Let us first examine what makes the CiteULike-DeepDyve alliance interesting and what might enable the two firms to actually make some money from it.

Here are the pros at this stage as I see them.

First of all, Mr. Park has long argued that there is a substantial pool of researchers (and I would argue a vast unrecognized group of laypeople who have a driving interest in a scientific subject whether as a hobby or because they are activists on an environmental issue, say, or are afflicted by or love someone with a dire illness) who have need of scholarly articles but who have no access to resource-rich libraries and so have to either pay whopping sums (say $35 a pop for maybe seven pages of text), prevail on the good will of those who do have access to such resources (and those so beseeched may feel uneasy about complying with such supplications given how confusing and occasionally draconian copyright rules are on sharing scholarly articles) or do without the information.

DeepDyve’s pitch to publishers is that this is a huge market and that sci/tech publishers (many of which are professional societies that make money from their publishing operations and which have simply ignored non-members or disdained them as dilettantes or ignoramuses unworthy of attention) are better off trying to entice them by risking peeks at articles online for 99 cents in the hopes that the lurker will so like what he sees via his non-reproducible, non-downloadable peek that he will pony up for the actual PDF or otherwise downloadable version.

The trick for both CiteULike and DeepDyve is to persuade the publishers that they are better off trying the 99 cent peek gambit than to remain aloof from this group and continue their present ways of making money: squeezing libraries until the pips squeak (not a sustainable strategy given cost pressures in academia at even the richest of institutions, let alone cash-strapped ones), charging ever more for personal subscriptions, and assuming that the general public is willing to continue forking over $20-45 for articles when they are becoming aware of the Open Access movement. This awareness and concomitant disgruntlement are fueling the drive for public access to taxpayer-funded research. In the current anti-corporate, tar and feather the price gougers public mood DeepDyve could actually provide some cover and heretofore untapped revenue streams for the publishers willing to partner with DeepDyve (and DeepDyve is making major strides there—more on that below).

Let us stick with the CiteULike-DeepDyve alliance for the moment. Another plus for the publishers that they should take note of is its potential as a way of advertising the existence of its offerings to educated (who also tend to be affluent ones) readers.

For instance, if you do a search in CiteULike you often will come up with journals you had not heard of before. Now, if I could take a series of 99-cent peeks at various articles in a periodical without even getting up my from desk (as opposed to, say, emailing asking for a free sample copy which I may or may not be granted and which may take weeks to arrive in hard copy and which may be several years old and thus not good advertising of the value of the journal) I might be impressed enough to subscribe to the journal itself or simply go ahead and purchase the full text of several articles.

The risk for the publishers, of course, is that I will do nothing but peek, get the gist and never do much more than that. But at least they would have gotten maybe $5 out of me that day, which is better than nothing.

Another plus for the publishers of the CiteULike-DeepDyve alliance is that as more and more libraries cut back on journal subscriptions even researchers that are affiliated with universities will find that they can’t get what they need from their own institutions and may start using the 99-cent peek and either download the full article (a win for the publisher) or try to get the full article via their library’s interlibrary loan service (which is still a win for the publisher in that some interest has been generated in the journal, which means some library somewhere will continue subscribing to it).

A minus for the publisher of the CiteULike-DeepDyve alliance is the rather inert state of scholarly bookmarking services (and spam problems at Connotea, for instance), so whether they would truly get much business from hooking up with the CiteULike-DeepDyve alliance is another question. (For instance, I just tried out CiteULike again for really the first major go at it since I set up my account way back in 2005—but then I am not a heavy duty scholar).

Likewise, for CiteULike the value of the relationship with DeepDyve can be realized only if DeepDyve can demonstrate that it has many big-name publishers on board.

For example, I tried a search just now in CiteULike on my usual search term, amyotrophic lateral sclerosis. Because DeepDyve has no relationships with publishers that feature the huge number of journals in the neurological sciences that, say Springer (which, as the sponsor of CiteULike, you would think would come on board with the CiteULike-DeepDyve alliance) or Elsevier do, I saw not a single icon for the 99-cent peek.

But the fact that I could not see the icon for my search is really an argument for the value of the CiteULike-DeepDyve alliance to publishers. I mean here I was, doing a search. My debit card is in the room. I could easily have ordered several articles if I had had immediate access to a peek and possibly sizable sums of money could have been extracted from me just now.

Think about that scenario, publishers. Do you really want me to have to try to find your stuff in Google or hope that I know enough to use PubMed and get to your toll access sites from there and then hope that I will simply hand over $35 or so without a peek or peep?

And DeepDyve is starting to forge a pretty impressive roster of blue ribbon publishers among its offerings and is approaching critical mass in terms of raising the comfort level among prestige publishers with its “Research. Rent. Read.” model. It now has relationships with major scholarly publishers such as the MIT Press, and the University of California Press, and with professional societies like the American Institute of Physics, the Radiological Society of North America, and the Association for Computing Machinery. Not bad.

I am quite puzzled, actually, as to why this quite interesting company is not getting the attention it merits in the library and scholarly publishing blogosphere. Perhaps librarians aren’t writing about it because they can usually, via professional networks and personal relationships, get their patrons what they need. Open Access people are not writing about it because they are philosophically opposed to cash changing hands when it comes to research information.

But let’s talk ugly truths here. We are not in a world where everyone has access to library resources galore. And not everything is Open Access yet. There are large numbers of people who need scholarly information and should have an affordable option for getting it and publishers should be aware that there are ways to make some money is some instances rather than none in many and that 99-cent peeks can lead to years of individual subscriptions.

William Park is an endlessly creative thinker. DeepDyve started off a nice little search engine. That in itself was interesting and worthwhile. He is now creating new models for the entire sci/tech publishing industry and making what had been a rather tired Web tool (social bookmarking) interesting again. Gotta hand it to the guy–there are second acts in American life.

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.

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.

And what’s more, one or more of the winning essays will be published in Computers in Libraries Magazine. I have had any article published in it and was that a proud day for moi.

Now, is that way cool or what!? I have always wanted to go to that conference. Put your thinking caps on, everyone!

The deadline for submissions in December 15.

And for those of you who don’t like writing, the sponsors are admirably flexible and say, “…So, we’re going to encourage submissions in a variety of media. If you’re video-oriented or you’re a graphic designer, or you make awesome collages, or you’re another kind of artist, we want you to submit an entry for the contest.

They will even accept poems!

Hmm, how about

Searching:

Those who wish to find
Info of a certain kind
Find themselves in cyberspace
Sorting through a database
And not just one but many such
Spending days or even much
Longer as they try
To recall the reason why
But, alas, with scant success
How they got into such a mess

On a more serious note, I spend a huge amount of time looking for grants and scholarships in the health sciences to list on the site I work on, ScanGrants and my dream federated search application (by the way, federated search is the ability to search many databases simultaneously instead of slogging through one after another in tedious succession) would be one that would search through ScanGrants and various other free online listings of funding opportunities such as that offered by Duke and that of Britain’s National Health Service and that would also be able to seek out any funding opportunities offered by the many disease advocacy organizations listed by such admirable groups as NORD – the National Organization for Rare Disorders and the Genetic Alliance.

What is needed is a powerful search tool that would enable research scientists that don’t have access to powerful platforms such as Elsevier’s SciVal Funding or Community of Science to be able to leverage free resources such as ScanGrants and the others I have listed. There are free grant listing databases, but we need a federated search tool so that researchers who are not affiliated with wealthy institutions can find funding quickly and easily so that they can get back to work on science, which is in the interest of all of us given that we will all be patients someday.

Thank you, Abe Lederman of Deep Web Technologies and Sol Lederman of the Federated Search blog for sponsoring this contest.

Go for it, potential contestants!

That chat has convinced me that American Well is set to become a transformative player in the American healthcare system via its system of Online Care. This is not hype. This is reality.

Since my first article I have gained a better understanding how American Well works vis-à-vis how consumers use it, its customer base and its technology.

I envision as readers of this interview those who work in the health plan industry, physicians, health economists, state legislators, health policy analysts, those who advocate for the chronically ill in the workforce and in the home setting and savvy consumer members of health plans who might want to bring American Well to the attention of those who administer such plans. I urge those people to view these video clips of Dr. Schoenberg simply, persuasively and really unanswerably making the case as to why American Well benefits everyone involved: patients/consumers, physicians and other healthcare providers and the health plans that engage the services of American Well.

Folks, this is not a slick pitchman at work, but a thoughtful physician/technologist making a case for a service that anyone who cares about efficiency in healthcare and better care for people we love (and for ourselves) should know about. Who would have thought that a single company has the potential to do the following:

• Bring back into medicine the legions of primary care physicians who have left the field out of frustration with the red tape and the headaches of running small practices
• Address the crisis in primary care that has resulted in needless physical, emotional and financial hardship for patients due to the lack of timely attention to medical issues the neglect of which at the primary care level results in otherwise preventable emergency room visits or hospitalizations
• Help health plans keep costs down and differentiate themselves from their competitors, serve patients and keep their providers happy by offering nearly instantaneous Online Care and an unparalleled, unprecedented level of access for primary care doctors and their patients in the office setting to specialists around the country via Online Care networks during office visits. No more slogging around town or their states for patients for referrals. Consultations and expertise right then, right there.
• Help health plans leverage what they already have: large networks of healthcare providers, many of whom (think young physician parents or physicians caring for ailing spouses or parents) would leap at the chance to practice medicine (which they love) from home, and enrollees in the health plans who would leap at the chance to talk to a doctor at a time of their own choosing in any setting that they choose that has Web access (which this days is most anywhere that they can use a smart phone).

Health plans these days need to think creatively and American Well is the answer. Make consumers happy by providing care 24/7. Address morale and retention problems among your providers. Keep costs down by keeping, say, diabetics as healthy as possible and out of the hospital and emergency rooms (or, alternatively, expeditiously getting them into them when that is the obvious and sagest course). Increase adherence rates for those on hypertensive and similar medication regimes. Keep people well and keep convenience uppermost and costs down.

Talk about win, win, win for all concerned. Clearly, this is something that not just health plans but that policymakers who shape the legislative and health landscapes and consumers who lobby for the adoption of rules that favor innovative thinking in the health sector should know about.

Here are the key points I picked up from Dr. Schoenberg.

I asked him on the phone if American Well has any genuine competitors. Apparently not. How can that be? After all, the ability to access Online Care (which is what used to come under the now somewhat dated rubric, “telemedicine”) has been around for some decades. Why has American Well been able to take the lead in terms of visibility and technologically? Schoenberg’s response is that he and his brother Ido Schoenberg, MD
chairman and chief executive officer of American as physicians saw the possibilities of Online Care and leveraged their previous experiences as successful tech entrepreneurs to patent many of the key technologies that would build on American Well’s on head start. These are shrewd cookies—good luck, would-be competitors. Moreover and interestingly, Schoenberg said on the phone that American Well is not really a healthcare company but a technology company.

One problem I foresee for American Well is that it a bit difficult to explain to new audiences what American Well is. It uses the term “broker.” What should those of us interested in American Well call it and designate it? A health technology and services brokering firm? A technology firm in the healthcare sector? All of the above?

But no matter what you call the company, the timing in so many ways is ideal for American Well to do well by doing good. For instance, there is the concept of the medical home and American Well seems like the ideal technological vehicle to really create that for increasingly Web-centered consumers, as personified by one of the leaders of the E-patient movement, e-Patient Dave.

And American Well is working with Microsoft to leverage the power of the personal health record. Indeed, American Well seems to be the dream service for health policy wonks, health technologists, E-Patients, consumers tied down with chronic illnesses, consumers who are in relatively good health but who need quick access to primary and specialized care sporadically, physicians who want to practice medicine in as hassle free and patient-centered circumstances as possible and health plans who want to win plaudits from plan members, providers and policymakers alike while seeing genuine, quick improvements in their bottom lines without having to create from the bottom up the intricate system that American Well can offer to and maintain for them.

Now I shall play skeptic. When I enthused about American Well to a very smart colleague of mine in healthcare, her first question to me was, “Fine, but how is quality of care monitored?” I asked Schoenberg that question on the phone and he pointed out that the health plans already have such quality assurance systems in place and that the beauty of American Well is that it is a relatively straightforward add-on to existing systems.

One of the things that I misunderstood about American Well at first is that I took it to be simply a system that would enable individual doctors to get into the world of Online Care relatively easily a la Hello Health.

But on the phone Schoenberg made clear that although he finds Hello Health an interesting company and a neat concept, American Well’s customer base consists of entire networks of healthcare providers as managed by health plans such as Blue Cross Blue Shield of Hawaii and Blue Cross Blue Shield of Minnesota. Those are quite disparate markets and illustrate the promise of American Well vis-à-vis succeeding nationwide. And interestingly, a broad swath of the political and health policymaking establishment in Hawaii seems to have embraced American Well as a vehicle to address the crisis in primary care and access to healthcare in general in that state. And, apparently, some lawmakers not only there but elsewhere want to mandate access to American Well-supported services in their states. One wonders if this will play to the advantage of the health plans American Well caters to, in that it might generate customers for them that they had not previously served or would it dilute its appeal to them as American Well or American Well-type services grow more common?

And on the matter of potential rivals down the road, Schoenberg mentioned on the phone that he has been somewhat surprised but pleased by the interest in American Well that large employers and non-health plan health networks have shown in American Well’s services. But he also pointed out that such networks would need a critical mass of providers available 24/7 and that large employers would probably be better off working through health plan providers that already use American Well services or lobbying those that don’t to do so rather than try to create provider networks of their own. Given that there are health networks (say the Mayo Clinic or the Cleveland Clinic) that may indeed possess such critical masses as well as being respected, recognized brands, one wonders if they are potential rivals or potential partners of American Well in the Online Care space.

American well provides both behavioral health and clinical-type medicine online. In some ways, American Well is ideal (i.e. care in the privacy of one’s home) for the treatment of illnesses that still carry a stigma in some circles (e.g., depression, PTSD).

There are still unanswered questions about what sorts of conditions American Well is ideally suited for. Everything from anxiety disorders to emphysema to bouts of the flu and earaches? Can patients swiftly get prescriptions and have them delivered to their home or arrange for quick pickup that very night? Do patients actually disrobe in the privacy of their homes in front of their computers if need be (and how secure is the system in that case?) or are the conversations between patients and providers mainly that? Can they upload digital photos they have taken themselves of rashes, for instance? Can they upload data from home medical devices? Does it have technologists who specialize in optimizing American Well products for the coming mobile revolution?

I have been to several conferences in the past year e.g., Health 2.0 and the Connected Health Symposium and chatted with representatives of federal agencies such as the VA about their need to offer health-related online services to Web-savvy cohorts of veterans and active duty military personnel. Keep an eye on, therefore, American Well’s relationship with the TriWest Healthcare Alliance. We shall see what those in the federal and state governments learn from American Well in that respect and whether American Well will expand further into government-related health services given the Obama administration’s healthcare IT-friendly policy program.

American Well also provides consulting services vis-à-vis healthcare metrics. A little touted by it but probably lucrative sideline and a convenient in to big companies like Aetna.

And since talking to Dr. Schoenberg I have had the chance to talk on phone with the equally pioneering and visionary thought leader in the fields of Online Care and the Care-at-a-Distance (which was a new term to me), Dr. Daniel Sands of the health division of Cisco’s Internet Business Solutions Group who talked about the absolutely fascinating product Cisco HealthPresence.

I asked Dr. Sands if HealthPresence presents a competitive challenge to American Well given that HealthPresence appears to leapfrog American Well in that HealthPresence enables patients (with help from an attendant) to actually do things such as (and I am quoting from Cisco here) enter physiological data such as that derived “…from a variety of medical devices such as a stethoscope, blood pressure cuff, pulse oximeter and other diagnostic equipment.” I asked Dr. Sands if such capacities of HealthPresence obviated the need for American Well.

Not at all, said Dr. Sands. He said he sees HealthPresence and American Well not as rival services but as offering healthcare consumers and medical providers a powerful, complementary synergy and mutually reinforcing platforms in that both Cisco and American Well are working towards the goal of creating services that enable providers to provide care wherever and whenever consumers and providers need it and, again, to prevent unnecessary and costly hospitalizations and, in the case of the elderly, rehospitalizations only a few days or weeks after discharge (the latter which Medicare often doesn’t cover, thus incentivizing for brick and mortar institutions the use of services such as American Well and HealthPresence).

Dr. Sands gave the example of a healthcare plan engaging American Well to provide online care to its customers and, in the event that one of its physicians after an video conference a patient via the American Well interface decided that a patient (particularly one in a rural area far from a doctor’s office) should undergo certain tests could arrange for such tests via a mobile version of HealthPresence, thereby obviating the need for slogging back and forth for the patient between primary care doctor and far distant specialty testing facility, the burden of traveling to which Dr. Schoenberg so compellingly illustrates in his public presentations on American Well.

Dr. Sands made the point that many healthcare administrators of brick and mortar healthcare institutions see Care-at-a-Distance not as a threat but as an opportunity to extend their presence via mobile technologies out into the hinterlands, which they are currently hard-pressed to serve and that such technologies as HealthPresence will enable them to leverage their existing networks of home healthcare providers and further the concept of “aging in place.” As I listened to Dr. Schoenberg and Dr. Sands I was grateful that there are such innovative thinkers and companies such as American Well and Cisco that really are making a world in which the elderly and the chronically ill can get care in the home or at a short distance from home and that someday hospitals, patients, health plans and society at large will not be slammed with the enormous costs of hospitalizations that need not have occurred in the first place. And, interestingly. Dr. Schoenberg was Dr. Sands’ student at Harvard. Talk about effective teaching! I wish I had been in that class.

I didn’t get the chance to ask Dr. Schoenberg questions such as: What exactly do you provide in terms of software and support to health plans? What is the minimum number of providers the health plan should support? Do you have special services for an older demographic and how are do you address matters of accessibility for the disabled? I suggest checking out its Web site and exploring such matters further.

To sum up, American Well is one of the most promising companies in the healthcare industry. It is creating a new paradigm of care and making the most of the Web for the benefit of patients, medical providers and health plans. It is transforming the zero-sum equation that has hobbled the American healthcare systems for decades. Think about American Well the next time you are in a doctor’s office as you wait (and wait and wait and wait) to see the doctor—assuming you can get an appointment before you either die or end up in the emergency room.

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.

Okay, who will want to read the rest of this post on this intriguing development on the scitech/academic publishing front? Well, scads of people actually.

Anyone interested in the economics of publishing generally (let’s say anyone who consumes content on the Internet, which includes just about anyone who can read and access the Internet) should familiarize themselves with the outlines of what I will dub, for the sake of convenience, the DeepDyve Initiative. (Doesn’t that sound cool—like a Robert Ludlum title).

And academic and medical librarians would be affected by a shift in how sci/tech publishers market and offer their wares and so would independent researchers. And so would those affiliated with major institutions that might, though resource-rich, lack a subscription to a particular journal. Faculty members in such settings might want to get a snapshot view of a key article and not have to pay the full price at all or at least not without a stronger sense of what might be in the full article. It is too early to tell if this “peek and maybe purchase the whole kit and caboodle” model will play in the Peoria of the highly conservative sci/tech publishing industry. But you sure do have to tip your hat to DeepDyve CEO William Park for some brilliant, innovative thinking that might actually help sci/tech publishers make at least a little money on articles that might otherwise render them none at all and that might actually lead to downloads of the whole enchilada of articles in many instances.

Medical societies and professional membership organizations in the sciences, social sciences (which often produce academic journals and depend on the revenue produced thereby and leverage such publications for member recruitment and retentions purposes) and even in the liberal arts might be persuaded to look at this model as a way of getting more of their material out on the Web for viewing and possible purchase by nonmembers, thereby bolstering their bottom lines and garnering eyeballs and attention for content from new audiences. And some fairly significant players on the scientific society/sci-tech publishing scene have signed to the DeepDyve Initiative.

For instance, here is a quote from DeepDyve’s press release (hey, I am not above cribbing from press releases—info is info):

“DeepDyve Unveils Online Rental Service for Research… The web is transforming the publishing industry and creating opportunities for new users to access our content,” said Martin Frank, Ph. D., executive director of the American Physiological Society. “The rental model that DeepDyve has pioneered enables us to serve these new users without compromising the products we offer to our traditional subscription customers.”

Now, the fact the leader of a leading scientific society has brought it on board with the DeepDyve Initiative is pretty convincing evidence that the initiative has legs. New publishing models are not something that are adopted willy-nilly in the world of sci/tech publishing and I find the fact that someone with the gravitas of Mr. Frank, who oversees a society with a quite broad, respected and influential publishing operation has given the DeepDyve Initiative his imprimatur persuasive evidence that Mr. Park and DeepDyve may be on to something.

I have talked on the phone to Mr. Park and I am of two minds about the DeepDyve Initiative.

On the one hand, he makes a persuasive case that there is an untapped market of knowledge workers and researchers unaffiliated with research institutions that publishers are currently not reaching, thereby missing out on the chance to leverage and milk to the fullest extent possible the content that they have at great expense produced. Park maintains that by offering such knowledge workers sneak peeks at articles publishers would get at least some revenue and that some is better than none and that many peekers will plunk down the dough for the whole shebang.

On the other hand, will the publishers (think Elsevier, Springer, Wiley et al) agree with Mr. Frank here, “…enables us to serve these new users without compromising the products we offer to our traditional subscription customers” or will they just regard the DeepDyve Initiative as cutting into the lucrative library institutional subscription market? And, indeed, how will librarians react? What is to stop, say, a medical librarian in a cash-strapped hospital library from taking advantage of this feature of the DeepDyve Initiative (I am quoting here from the DeepDyve Press release):

Affordability: Users can rent the full text of an article for as little as $0.99, or join a monthly plan and enjoy greater discounts and increased flexibility.

Ease of use: With DeepDyve, users can click, rent and read without any hassles.

I mean, couldn’t librarians budget for a monthly plan, read a rented version of an article, absorb that info and paraphrase it for the clinician who has requested a literature search and so not bother ordering the actual article via Docline and other interlibrary loan systems?

After all, the publishers might be leery of helping small libraries and independent researchers read online something that they might then have little need to read again in a full PDF procured at great expense from a richer library (in the case of the small library) or via personal download (in the case of the independent researcher). If the DeepDyve model caught on would big research libraries have the incentive to purchase the expensive institutional subscriptions that they monetize by charging smaller libraries interlibrary loans fees for and which faculty might not need as much if they could plunk 99 cents for a peek at an article, thereby saving their institutions thousands of dollars per year in unread journal issues? And those institutional subscriptions are the lifeblood and cash cows (hey—metaphors are handy things so cut me some slack on my prose style here, okay?) of the sci/tech publishers. But Mr. Frank, the leader of a quintessential, respected mainstream scientific society seems unfazed by the notion that the DeepDyve Initiative would somehow damage revenue models and seems to think it would simply enhance the position of sci-tech publishers. I am not so sanguine, but I am not as smart a cookie as Mr. Frank and Mr. Park.

Also, I am not sure if the subscription model will gain traction. Getting anyone to buy anything these days is not easy. And getting people to pay for content on the Web is particularly hard. But if you make your living by research, you might go for the DeepDyve Initiative. Here is more from the press release,

“Start Researching with DeepDyve Today
DeepDyve is currently offering a risk-free, 14-day trial that allows users unlimited access to thousands of authoritative journals at no cost. Users enjoy continuous access to any article until their Free Trial expires, after which they may join one of three plans: Basic Rental Plan: For just $0.99 per article, users of this “pay-as-you-go” plan can rent and read a premium article from one of the many prestigious journals available through DeepDyve. Articles can be read multiple times for up to 24 hours. Silver Monthly Plan: For $9.99 per month, users can rent and read up to 20 premium articles per month. Each article can be read multiple times for up to seven days. Gold Monthly Plan: For $19.99 per month, users can rent and read an unlimited number of articles for an unlimited amount of time. There is no expiration date.”

Seems like a good idea to try it out. That way, knowledge workers (and clever librarians in resource-poor settings) could determine how much they can they can absorb of an article online only (and that would be enough in many cases, given that often one needs only the gist of an article and skims or skips the methods, etc. sections anyway) and if they would indeed like the pluses of such things as:

Personalized suggestions: DeepDyve will automatically display suggested articles based on a user’s profile.

Email and RSS alerts: Users can receive regular updates of new articles and search results delivered directly to their email inbox or RSS reader.

More Like This: DeepDyve offers links to related content with every search result and article page.

Now those are features that readers will like and that publishers should take note of.

For instance, I am quite interested in the subject of amyotrophic lateral sclerosis. In the course of examining the workings of search engines, I use “amyotrophic lateral sclerosis” as my test search term. I have actually purchased some quite expensive items in journals–and indeed in one case an entire issue of Elsevier’s Physical Medicine and Rehabilitation Clinics of North America on the subject as a result of just such tools as DeepDyve’s More Like This tool (which in itself is a neat thing and displays DeepDyve’s prowess as a search engine).

Thus, I would really encourage sci/tech publishers to take a serious look at the DeepDyve Initiative. After all, if I don’t know about your content, I can’t purchase it and even though publishers might be leery of this model (again from the DeepDyve press release, “Free search & preview: Researchers can be certain of an article’s relevance before renting”) it makes sense to try to entice readers with a glance at content.

Take a chance, publishers. Yes, as a reader I may just go with getting the gist of an article from the peek and you might, therefore, make only 99 cents off me (minus DeepDyve’s cut) that time. But 99 cents from thousands of people like me adds up and I can’t imprint onto my brain the graphs and charts in your content—to get those, I would indeed have to order the full article. And I would be more likely to do that if I could see them via a preview.

At the very least, DeepDyve is, as Mr. Frank (who cares both about science and his society and is thus not likely to do anything to harm the interests of either and that is good enough for me) says, pioneering in the content delivery and scholarly publishing world. That is news and exciting and intriguing. Won’t it be fascinating to see what happens?

I envision several audiences for this interview. First, your comments may be helpful to members of the general public who may have heard the term “clinical trial” but who don’t really have a handle on this rather complex subject and who are the kinds of people likely to be interested by what you are doing at MyClinicalTrial.com.

A second potential audience may be members of the public recently diagnosed with a serious illness like amyotrophic lateral sclerosis–also known as Lou Gehrig’s Disease–or who have a condition like Parkinson Disease who are either hoping to find treatment for themselves or who simply want to advance the cause of science and prevent others from undergoing the ravages of illness that they have known.

A third potential audience is that of people who are healthy but who would like to enroll as healthy volunteers in a clinical trial so as to help others by contributing to medical research by providing researchers with important information for comparison with people who have specific illnesses.

A fourth potential audience is that of medical people who may not be full-time clinical researchers but who are intrigued by or passionate about a potential treatment and are running a clinical trial perhaps for the first time and are not in a well-known, well-funded medical center and so need your help and expertise to recruit trial participants.

This all leads to my first questions. Have I gauged the potential audience and users of MyClinicalTrial.com about right? Have I left out anyone?

Yes, you pretty much covered it. We want to provide resources to those people that are just looking for an answer to their healthcare challenges. Not all medicines work for everyone and new trials may provide a solution to those people that fall into the percentage that are not successfully treated. Also, for those people that don’t have insurance to cover their medical needs, some trials can help them by providing medical screening, supervision, and study medicine.

Could you tell us a little about your personal and professional background and why you think MyClinicalTrial.com is important?

I have been involved with clinical trials for over 20 years. It really started back in college when I volunteered for different trials. Later in life I began to use my marketing experiences to help identify patients for clinical trials to speed up the clinical trial process. I think most people have some friends or family members that are affected by cancer or other live threatening diseases. I personally have lost family to cancer and have family and friends that are in cancer trials. One friend was diagnosed with breast cancer. She had trouble finding trials for her cancer. MCT is a great tool for helping doctors spread the word about their trials and for patients finding studies that match their conditions locally.

Let’s backtrack a little here so as to address the matter of how information about clinical trials is being disseminated on the Internet and changing the patient recruitment process. For example, I first heard about MyClinicalTrial.com by seeing a tweet that linked to this press release.

Now that in itself is a rather interesting sign of the times vis-à-vis the mix of social media and orthodox marketing. Could you tell us how you envision the employment of social media on MyClinicalTrial.com? For instance, is MyClinicalTrial.com on Twitter so that every time a new study is added to its listing a user would get a tweet?

We are 30-45 days or so away from setting up a Twitter and Facebook account. It would notify people of new studies and information about their conditions.

That being so, will users of MyClinicalTrial.com be able to sign up for tweets on every new addition or just on new trials of their particular interest (e.g., multiple sclerosis, Type 2 diabetes)? Perhaps something along these lines?

Yes, very similar.

You offer email alerts notification sent to potential patients.

Yes, we will have an email notification function for those who sign up for it. It will target people based on their state, zip code radius, and/or medical condition.

Do you offer RSS feeds too or do you find that RSS is just not catching on in the world of clinical trials and in healthcare generally?

Not yet. We will pull in RSS feeds for providing additional content on our site.

It says in the press release, “Our goal is to educate people about the importance of clinical trials, provide the latest industry information, and identify the right studies for prospective volunteers.” Well, in the interest of the very laudable goal about public education on the subject of clinical trials, I’d like you to ask you to walk our audience and me through the statement below, which I found here.

“Patient Enrollment Services
MyClinicalTrial.com is an exclusive service provided by Clinical Site Services (CSS). CSS is not a patient recruitment company, but a Site Performance Company focused on developing and managing site’s ENROLLMENT PLANS to increase enrollment for clinical trials.”

Could you tell us a bit about why Clinical Site Services saw a need for MyClinicalTrial.com?

MCT is a method for the doctor to get information about their office and trial into the community; and for people to find trials that match their conditions on a local basis. We understand that most people don’t understand the verbiage that is listed on clinicaltrials.gov and other listing websites; we try to make it easy for most everyone to understand. We want people to be educated about clinical trials, the processes, the risks and benefits, and any other study information before they decide on whether to or not to participate. An educated study volunteer is much more likely to participate and stay in a trial.

How does MyClinicalTrial.com differ, for instance, from CenterWatch and
and TrialX and could you elaborate on the difference between a patient recruitment company and a site performance company? Don’t they both assist those running clinical trials with enrolling subjects (be they those with the illness under study or healthy volunteers)?

Clinical Site Services (CSS) works for Doctors (sites) and Sponsor Pharmaceutical companies with patient enrollment services. While patient recruitment is the number one reason for trial being delayed, we believe that sites (doctors doing the trials) need to be effective and efficient in the process of identifying patients for trials and, just as important, turning the interest of potential patients into enrollment. If someone is interested in participating in research, sites need to be able to find them, provide them information about the trial, and bring them in for screening. Most sites don’t do any of this well. CSS helps bridge the gap between the interested potential patient and the clinical trial. We help the sites perform better by providing services to increase their enrollment potential.

While you are at it, could you please tell us what a contract research organization is?

A Contract Research Organization or CRO is a company that manages the trial or parts of the trial for the pharmaceutical company. While the term is somewhat vague, companies that provide project management, protocol development, data collection and management, quality assurance, drug supply management and distribution, regulatory, patient recruitment, etc. are considered CROs.

The site for Clinical Site Services has some interesting wording, “convert initial interest into enrollment” and, “…we will formulate a retention strategy that creates a sense of community for the study and makes participants feel both supported and appreciated.” Could you tell us how you see MyClinicalTrial.com doing the first and do you envision MyClinicalTrial.com playing a role in the supported and appreciated part or is that later stage beyond the scope of MyClinicalTrial.com? To wit, will MyClinicalTrial.com basically concentrate on enabling potential enrollees to keep abreast of new clinical trials in their area of interest or do you hope that MyClinicalTrial.com will evolve into a full-blown online patient community (albeit with a focus on the clinical trial process rather than the full spectrum of chronic illness) a la PatientsLikeMe:

Clinical Site Services is a company that supports the enrollment process for pharmaceutical companies and sites that do the trials. MCT.com is a tool that CSS uses to promote clinical trials and the education of research. We will be adding features to MCT that are similar to patientslikeme.com in the future or partner with companies similar to them.

Where do your listings come from? Do you list studies that cannot be found on ClinicalTrials.gov?

Our listings come from sites that are doing trials, from Sponsors running trials, and from the ClinicalTrial.gov website.

What is the business model for MyClinicalTrial.com? It is a public awareness tool. But what else? You say here, “MyClinicalTrial is an informational website where study volunteers, doctors, and others can find out more about the development of medicines and devices. This website is promoted nationally through advertising and web branding.” Could you talk about where you are advertising MyClinicalTrial.com?

We currently advertise nationally through the Television, radio and print ads we run for our site clients. Each client has a unique study posting that is active during our advertising campaign. People can call the site directly or visit the study posting on MCT.com. We also are getting links on other websites that potential study participants may be visiting. Starting in 2010 we will be initiating internet advertising on the major search engines, social networks, and other sites that make sense.

You seem to have multiple audiences. The first is patients and the second are the groups you are trying to connect them to. That second group is your primary client base, which appears to be pharmaceutical companies and physicians conducting clinical trials. Are the physicians mostly those in private practice curious about a particular treatment and its safety and efficacy or researchers in academic and industrial laboratories or small biotech firms? Again, do you offer anything that patients can’t get from CenterWatch and TrialX–especially given that the two have recently partnered?

We will be adding a lot more functionality to the site. Email notification, log in to manage their profile and types of studies, we will be adding an organization section that connects groups with specific medical conditions –both nationally and locally. As we see the needs, we will be adding new functions and information.

Could you please tell us your reaction to the recent agreement between Pfizer and Private Access to establish an online community designed to increase clinical trial awareness and participation?

Pfizer has always been at the forefront of technology and new innovative ideas of improving the education of patients around clinical trials. I think it is great that they are doing this. It will help everyone in the industry.

Specifically, the Pfizer-Private Access platform will offer a way for patients to feel that their privacy will be protected. Do you see any problems at MyClinicalTrial.com in that regard? For instance, if I sign up as volunteer do I really want to simply enter into a form on a Web site that I am interested in clinical trials about cancer or sexual dysfunction?

The information people provide us is not used for anything else other than giving us an indication of the types of trials that they are interested in. We will only use this information for connecting them with information on clinical trials. None of the personal data will be sold.

Is there any particular reason that you have a cap of 250 miles on the search page here?

We have found that most people will not travel further than this and typically not more than 30 miles. If we provide a larger radius, other companies and competitors use the site for other reasons than finding trials to participate in. Most of our clients do not want people contacting them from a distance that a patient would not be willing to travel during the trial. If we find that people would like to increase this radius, we can do so later.

But if I have a rare disease and live in Wyoming, I may have to travel well over that distance to participate in a study, no?

People can still search for studies base on states if they want to increase the searchable area.

One thing I really liked about MyClinicalTrial.com is that I can search for clinical trials and obtain contact info on those conducting the study without having to register. That endows those wary of uploading info into a site with a way of contacting researchers without revealing too much too soon and contacting only those who seem to be studying one’s own specific condition. By contrast, I have to create an account in TrialX in order to contact a researcher via TrialX.

What do you see as the particular strengths of MyClinicalTrial.com? What makes it particularly innovative? What’s its wow factor? Or do you even see that as important or do you prefer a simple, unglamorous but useful tool for serious people, be they clinical researchers or patients afflicted with dire illnesses?

I hope our “wow” factor is the simplicity of the site and how easily it is to navigate to find the information that they are searching for. We hope to create a site that is evolving and growing from input from patients, sponsors, and organizations associated with clinical trials.

What improvements are you planning to implement at MyClinicalTrial.com in the next few months? It is not very social media heavy at this point, for instance.

We will be adding more social media aspects to the site soon. We will be setting up a Twitter and Facebook account. Also, there will be more information about medical conditions and organizations associated with these conditions.

On interesting development on the clinical trials landscape is the advent of a sort of do it yourself, primarily patient-led study that is connected to an online patient community, such as the recent study of lithium in ALS under the auspices of PatientsLikeMe. Do you have any comment on that and do you plan to list such studies on MyClinicalTrial.com?

The studies we have on our website will be posted by the researchers doing the study. There is a lot of information out on the web and many different websites that have different goals. Our goal is to provide information on clinical trials that come from those who are conducting the trials.

Do you see MyClinicalTrial.com as a part of the growing e-patient movement? That is, patients harnessing the tools of Web 2.0, Health 2.0 and Medicine 2.0 to become “prosumers” (a term I heard used at the recent Medicine 2.0 conference and which refers to patients who are very proactive in seeking out information outside traditional medical circles about their illnesses, particularly via the Internet).

I see MCT as a tool for people to identify options in their health care and potentially part of this e-patient movement.

How do you envision MyClinicalTrial.com in a year? In five?

Good question. There are so many directions we can take this website. In following our current goals, we do want to provide a website that people can come to and get answers quickly. We cannot be everything to everyone, but we hope to be a valuable resource to those people interested in clinical trials.

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

To be honest, my heroes are people that take the time to find better medicines to improve all of our lives. There are people like Darbey Steadman who is dealing with Stage 4 Metastasis breast cancer and is working hard as ever to help people with their financial needs who are participating in clinical trials. There are so many doctors that have devoted their lives to finding cures. These people are true heroes; these are those people that strive to make a difference in people’s lives.

Thank you for your time.