Significant Science

Before we begin, Dr. Sands, I’d like to give readers a bit of background. You are already well known to those of us who follow the movements Health 2.0, Medicine 2.0, the e-Patient movement, Participatory Medicine, Connected Health and to those who work in the fields of health information management, medical informatics and health IT via your incredible range of activities as a physician (notably to the well-known e-Patient Dave), as a technologist and for your contributions to the fields of academic medicine via your position on the staff at Harvard Medical School. You are also a much sought after speaker at conferences such as the Connected Health Symposium and elsewhere on many of the topics listed above. You have also served on the board of directors of the American Medical Informatics Association and serve on the Founding Board of Directors of the Society for Participatory Medicine.

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.

When it comes to funding individual projects, people not trained in the science and biostatistics realistically would find it hard to make informed decisions about funding specific projects.

That said, clinical trial steering committees should ideally include patient representation, as should institutional review boards (many already do). The problem is often that patients, who are not otherwise employed to do these sorts of things, would require compensation, which would drive up the cost of research.

Another research area I think is important to patients is clinical trial recruitment. Patients should be able to search for specific clinical trials for which they might be eligible. The screening should be automated based on patient characteristics contained in a robust personal health record.

This not only would require improvements in personal health records, but also requires changes in the ay clinical trial protocols are represented—rather than by text, the protocols would be represented by a controlled vocabulary in a structured manner. This has been tried in the past but has never become mainstream.

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.

For example, I gave a keynote presentation at the Association of Rheumatology Health Professionals/American College of Rheumatology meeting, and Dave and Susannah Fox have presented at similar mainstream conferences recently, as well.

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.

There are many blogs that I read occasionally. Not sure which are “must read” blogs, but here is a partial list:

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.