A Research Agenda for Participatory Medicine and the Connected Medical Home

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Recently, in a blog post published December 22, 2008 in The Health Care Blog entitled  "The Connected Medical Home,” we described the synergy between the efforts of proponents of Participatory Medicine and the Medical Home.  Our main purpose was to suggest that both providers and patients are longing for a synthesis that takes the best features of Health 2.0 as consumer-generated health care, and combines these with a primary care medical home model offering personal relationships with health professionals who understand the power of the Web and are willing to use the Internet to improve patient care. 



Since our earlier writing, which received mostly positive commentary, a new President has been elected and Washington is on fire with talk of health reform and economic stimulus. Health IT and the medical home are primed to take center stage in the evolution of health reform, most observers would agree.  However, there are still many details to be worked out.  It is not entirely clear what constitutes the best uses of health IT inside the medical home model, nor how to hold these uses accountable for improved care and lower cost of care, let alone how to connect these with consumer-based technologies and bring both to market at a reasonable price, certainly a prime consideration during a recession and if we expect efficient widespread use. 



There is significant debate over the process of certification of EHR technology, required by the HITECH Act, in the process of which some observers have pointed out that tools for consumers, such as PHRs from Google and Microsoft, don't fit in any category described within the HITECH Act.   Perhaps most important, our experiences of care coordination and continuity enabled by Web and Internet-connected tools and methods are in their very early stages, with only a few published studies on the effects of patient engagement and a small, although growing, number of anecdotal descriptions. 

We propose that Participatory Medicine and the Connected Medical Home should be considered a new domain frontier, worthy of both conceptualization and research.

Perhaps the future of primary care depends upon the thoroughness and scientific rigor with which we approach this new area of study, and, of course, how quickly and efficiently we are able to apply what we've learned. 

What follows is a draft proposed research agenda for Participatory Medicine and the Connected Medical Home; in essence a set of questions that we think ought to be answered in the next few years as a means of helping to direct health care reform in this country.

1.    What are the limits of self-care?   We acknowledge that most health care is still provided in a "top down" and paternalistic manner, one in which the physician or nurse is the "expert" prescribing to the layperson.  This model is no longer a good fit in our culture where medical literacy is high and growing, and where the Internet and the Web provide easy access to data, information, and knowledge.  

But how do we know when self-care is appropriate, will work better than the status quo, and which technologies are most important for self-care to succeed?  

Here are several more specific questions that lend themselves to investigation:

a.    Can communications and monitoring technologies increase those limits? How, and through what mechanisms?b.    Does it make sense for patients with straightforward chronic conditions such as hypertension to be making some of their own medication dosage and titration decisions (aided by remotely monitored data)?  As an example, the management of uncomplicated hypertension is algorithmic in nature. Could we equip patients with some of those algorithms and monitor their progress online?   If this is successful with hypertension, what other chronic illnesses might also be amenable to self-care with IT support?


2.    What are the components of monitoring for Participatory Medicine that are most impactful in moving patients to healthier behaviors and in encouraging persistence?  We, at the Center for Connected Health, recently completed a trial showing that daily contact with an avatar coach resulted in steady state adherence to an activity regimen, whereas individuals who did not have access to the coach had a significantly lower adherence to the program.   What are the right circumstances to employ non-human coaches? What other technologies (text messaging, interactive voice response, software and games) can be employed in this manner?
3.    How do we segment populations in order to know which interventions are most appropriate for them?  The corollary is how do we find people who are completely disengaged in their health and move them to at least ‘sign up’ for an engagement program? Can participatory medicine tools help?  Perhaps this is the place where the tools of behavioral economics and choice architecture intersect with participatory medicine.

4. What is the power of the social network as a coaching tool and for which patient segments?

a.    We (JKvedar and colleagues) recently published a  HYPERLINK "http://archderm.ama-assn.org/cgi/content/full/145/1/46" paper showing that psoriasis patients who were part of online social support groups had a self-reported higher quality of life.  Others, including  HYPERLINK "http://www.patientslikeme.com/"PatientsLikeMe have made a number of claims and observations regarding the power of social networks as tools for behavior change and improved care.

b.    Can one's Facebook friends, in aggregate, be one’s health coach? I.e. If we were to publish your health physiologic information on Facebook along with your goals, would your network encourage you to do better and would that make a difference? Can this sort of coaching replace traditional outbound phone calling of disease management type?

c. How much can we push this phenomenon?  When, truly, is the wisdom of crowds more effective than the wisdom of an individual provider? Is a social network where an MD is ‘in residence’ and participating in the discussion more powerful than one that is non- MDs only?  Will having the expert in attendance be viewed as a benefit (trusted resource) or an inhibitor (lurker/stalker)?

        d.  What is the best way to represent the coaching power of a social network in the electronic medical record?  In the PHR?

There will undoubtedly be follow on research questions as we sort out the answers to those above. However, we feel that substantial progress on these questions will move the field forward and give providers more comfort in the utility of participatory medicine as a tool to help them manage populations of patients.  

Let us know what you think. Are there critical research questions we missed? Who will fund this research agenda?

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15 replies »

  1. The medical home is a no brainer. Of COURSE we need to make care more accessible at bedside. Of COURSE technology plays a role. I look forward to the future.

  2. I’d like to address Adam Sigelman’s question. Adam, you make a singularly important point: interoperability among different EMRs and EHR technologies is critical not only for data exchange, coordination, and continuity — it is a requirement for quality and performance measurement.
    Actually, the solution to your problem is already available. The CCR standard is capable of unambiguous structured data output from any EHR technology such that data aggregation for reporting and analysis can be carried out effectively and efficiently, for any population of patients and for any condition or diagnosis.
    There is still upfront work to be done at the “data aggregator end” and in the design of such efforts. Groups like yours need to unambiguously decide the data elements to be included in the CCR XML files that are to be exported, and what coding to use. You need to assure the providers will enter those data elements routinely. And you need to have the groups put pressure on their vendors to export the CCR xml files in a reliable, consistent, manner. I know, this is still a lot of work! But people are doing this successfully, with good results.
    I think a lot of this work is discipline that would be much easier to accomplish — in fact, I think it would be accomplished very quickly! — if the money were there as incentive. Unfortunately, most of the time it isn’t.
    Which brings me to Adrian’s question and the post by Michael Kane. I don’t want to get into a spat about the meaning of the “medical home” here. But it does seem to me that managing a population of patients in an accountable fashion, and being rewarded financially at a level that is significant and commensurate with cost savings actually achieved, is the essential ingredient to success of and revival of primary care. Re-packaging the old business model of primary care and calling it something new is not what Joe Kvedar and I are talking about when we describe the “connected medical home.” We are assuming that payment reform and accountability are accompaniments to this movement. That may not be how everyone else sees it.
    Kind regards, dCK

  3. Great discussion and a slew of important questions worth fleshing out, thanks! I am both intrigued yet cautious of the participatory and “e” movements, among other recent innovations in part because of the ways it can both empower (but empower to what end) as well as silence a host of other important voices that need to be part of these discussions. Furthermore, does more participation, more EMRS, and “more” care equal better care? And finally, what exactly are we trying to achieve with a participatory agenda??

  4. Drs. Kibbe and Kvedar:
    I applaud your post and would like to suggest another line of investigation.
    I am a consultant currently managing a project for a group of rural health centers with the goal of aligning their common EMR implementation with the goals of the medical home. For the medical home to suceed, it is not enough to have consumer generated care. Provider organizations need to build a robust and accurate clinical and operational data set that they can leverage to provide proactive care to their patients, especially those patients who are less motivated to take their health into their own hands.
    We have wrestled with a number of important questions on how to set up the EMR to acheive these goals. What key data points and key performance indicators are necessary, and how often should they be recorded and measured? How do you design the EMR and reporting structure to track referrals, patient self-management, and patient outreach? How do you incorproate interaction with the technology into nurse, staff, and provider workflow so as to minimize the impact to patient throughput?
    While these questions do not deal with participatory medicine, I think they are equally as important to the success of the medical home concept.

  5. This is a wonderful post. I am particularly interested in a discussion around Michael Kane’s recent comment. How do we conceive “the medical home” or any other workspace shared by the patient and a PCP to avoid the conflict of interest that Michael’s comment implies?

  6. Dear Colleagues: One of the things I most like about blogging at this particular time is that people respond with their thoughts, and we’re less and less afraid of being completely honest about our feelings.
    Margalit puts it all in perspective, and I like the way she does it. The conversation is a “symphony.” We’re making music!
    I hear so many doctors today with the same opinion as jrossi, and I am fully of his/her world view. But Dr. Kvedar and I are also addressing an audience that is interested in basic clinical research about the effectiveness of care using different tools, and I don’t think that our current difficulties ought to stop us from this very old and respectable scientific pursuit of data about what works and what doesn’t in medicine.
    Kind regards, DCK

  7. Let’s face it. The medical home model is simply just a gatekeeper system with lipstick on it. It’s just another way for primary care docs to get more control again and increase their incomes. The fact that it has a new name will not change the realities of how cost ineffective and wildy unpopular it was in the past.

  8. This series of posts is like a symphony. Dr. Kibbe and Dr. Kvedar with the visionary outlook to where we need to go: medical homes coordinating care, educated patients that contribute to their own health care and everybody is using the latest technology to achieve quality of care and better outcomes.
    And then there’s rbar with a sobering view of actual patient capability and maybe even desire. Do we really want to make our own hard decisions when it comes to serious illness? Is there a certain level of comfort in deferring to a trusted expert in time of need? Is that maybe part of the physician’s work? For some it may not be necessary, for most it cannot be any other way. And by the way, medical homes should only enhance the ability of physicians to attend to this need.
    However, the problems of the moment must be resolved first. The anger and frustration expressed by “jrossi” are what I hear day in and day out from physicians in small practices everywhere. Too many patients and too little pay.
    Putting ideas like medical home in practice requires that someone pays for the time a physician spends coordinating care. If doctors start spending more time with each patient, who will attend to all people needing care? We need more primary care providers and they need to be paid better.
    So how about technology? The “sophisticated EHRs” that jrossi refuses to “jockey with” are not going to cut it. They are viewed as a total waste of more unpaid time.
    Enters the “diffusion of simple communication tools” suggested by “inchoate but earnest”. Some simple technologies, not intrusive, not time consuming, can and will help busy physicians if the powers to be encourage their “diffusion” without the undue burden of useless “sophistication”.
    I believe we can get to where Dr. Kibbe and Dr. Kvedar are aspiring to go, but there are a few house keeping items that need to be taken care of first: sweeping primary care reimbursement reform and small, simple steps in technology implementation.

  9. rbar wrote:
    “what I encounter much more often are misinformed or misguided patients, and even more often, after discussing options and asking the patient how he/she wants to proceed, the question: Well, what would YOU do in my place?
    Given the massive problems facing US healthcare, I think these efforts are rather marginal. Like arranging the deck chairs on the Titanic … or wondering whether you’d rather communicate about the impending doom by twitter of facebook.”
    “Misinformed & misguided” describes how life is generally lived by most people, most of the time. Emerging communications methods make that abundantly clear; one needn’t be a scholar to parse the data demonstrating that. The Enlightenment exponents of reason as an effective organizing principle for humanity were working with an inadequate data set.
    Computing technologies will enable some of us to be misinformed & misguided more rapidly – that is, to iterate “solutions” until a marginally less misguided, less misinformed “solution” emerges for whatever may ail us.
    So, what to do? Perhaps let’s proceed from the ASSUMPTION of misguided & misinformed, reset expectations, and perceive more clearly that addressing (set aside solving) very very basic health care issues will leave us all considerably better off. Diffusion of simple, “just good enough for simple jobs” communication tools will help a great deal, in ways that almost certainly cannot now be anticipated & will likely not ever be fully appreciated.

  10. I am a rural family doctor, in the game for 19 years. After reading around on a few HC blogs, I have come to the conclusion that HC bloggers like Dr. Kibbe live in a different universe from me. In my universe, there is a huge primary care shortage. There are not enough warm medical bodies to staff the medical home and jocky the sophisticated EHRs. There is no one who wants to make sure that all the guideline-based preventive care is done, because it’s just too much damn work for too little damn money. Better to go into derm or allergy and sidestep the hare-brained schemes of the HC gurus. Didn’t the match of just one week ago show a decline in med students going into primary care, once again? You’re giving us theory, but med student choices are facts.
    In general it is not a good idea to pile more and more work on people when they are already overworked and when they have other options. Cut the crap about the medical home and pt-directed care and EHRs and all the other pie-in-the-sky nonsense. You’re making the primary care shortage worse.

  11. From my perspective as an academic family physician and spare time software guy, there’s a lot to like in what you have to say.
    In my mind, having grown up in a rural state, there is a real analogy here between primary care and the family farm. For years our nation’s farm policy has disadvantaged the family farm to the extent that they almost became extinct. The revitalization I see coming in our area is the family farm being reborn through direct connection to the consumer via farmer’s markets and the locavorious movement.
    Primary care could benefit just as well from a more direct connection to patients than they enjoy now. However, policy that solidifies the current status of clinical data to “big iron” like silos of information rather than putting it in the hands of the true owners, our patients, will do much to discourage this and slow it down. We need policy that breaks down the current data ownership model, and encourages work to create methods to encourage direct connections between patients and the primary care sector working to serve them.
    Don Nease, MD
    Univ. of Michigan & Cielo MedSolutions, LLC

  12. As I have said in the previous discussion of this topic, think you are hyping a phenomenon that may work for a minority only. These smart patients do exist (although, as a side note, they rarely end up with physicians who embody the paternalistic approach), but what I encounter in in actual practice (in my service area with a very high rate of private insurance and college education) is usually either 1) patient passivity or 2) misguided participatory medicine:
    1) one has to remember that we live in a society in which people are un- or misinformed about basic policy matters of importance (everyone can look up numbers about widespread inability finding foreign countries on a map, or erroneous belief that Saddam Hussein can be linked to 9-11; it looks like even the high earners don’t even know how the tax code works etc.)
    2) Many patients who want to participate do so on the basis of a mixture of actual science, advertising and self made reflections. It is an extreme example, but let me just tell you that an RN (!) in her late 20s recently wrote a long Email to me hypothesizing (among other things) that her husband’s chronic headaches might be “semen build up” since the headaches tend to get better after sex (these headaches clearly were chronic migraines in the setting of medication overuse or “rebound headaches” and I suggested treating those according to the current gold standard, and I counseled appropriately and extensively). And which physician does not hear misguided theories about allergies, on a near daily basis?
    Again, I don’t deny that there are smart patients who participate well – but what I encounter much more often are misinformed or misguided patients, and even more often, after discussing options and asking the patient how he/she wants to proceed, the question: Well, what would YOU do in my place?
    Given the massive problems facing US healthcare, I think these efforts are rather marginal. Like arranging the deck chairs on the Titanic … or wondering whether you’d rather communicate about the impending doom by twitter of facebook.

  13. Drs. Kibbe and Kvedar, Your logic is sound and smart. There is a growing cadre of people who demand participation and a co-creation model of health with providers and coaches. Another lens on this in a post-Obama health era is to consider some of this research in the context of comparative effectiveness: we’ve analyzed medical procedures this way (e.g., minimally invasive surgery vs. traditional techniques). Why not compare people managing diabetes with web 2.0-enabled tools, health coaching, etc. vs. a less-engaged population of diabetics? The Connected Medical Home model can, I believe, help mitigate the future-factors of scarce clinician supply and scarce financial resources. Furthermore, those of us who have sobered up in this world of shattered 401(k) values will be seeking more participation and self-reliance in our lives. Of course, we’ll want to do so in ways that have been shown to be effective. In this sense, there are (at least) 2 Connected Medical Homes: the clinician’s and the patient’s. Thanks for your thoughtful construct here. JSK

  14. David,
    “It is not entirely clear what constitutes the best uses of health IT inside the medical home model, nor how to hold these uses accountable for improved care and lower cost of care,….”
    I am not sure why would you think that. Care is care under any setting. As we moved towards personalized care, the HIT would and should have the same role in hospitals, outclinics, homes, yards…..whereever you go. The question is not what role it should have…the question is how to ensure it does play the right role. Same goes with accountability- if one is designing a policy, the same tenets will apply to all locations.
    We seem to confuse the people by trying to create the special circumstance for everything at such an early process….
    rgds
    ravi
    blogs.biproinc.com/healthcare
    http://www.biproinc.com

  15. My apology for hijacking this thread but I hope someone very smart reviews yesterdays article in the New York Times (link on my sig)
    Realage (aka Dr. Oz and Oprha) have been selling patients private health information to drug companies is going to set back both PHR’s and any national health information network about a year. 27 million people have taken the test, and 9 million have signed up as members.
    Online Age Quiz Is a Window for Drug Makers
    Pharmaceutical companies pay RealAge to compile test results of RealAge members and send them marketing messages by e-mail. The drug companies can even use RealAge answers to find people who show symptoms of a disease — and begin sending them messages about it even before the people have received a diagnosis from their doctors.
    While few people would fill out a detailed questionnaire about their health and hand it over to a drug company looking for suggestions for new medications, that is essentially what RealAge is doing.

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