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?