Applying Participatory Principles to EHRs/PHRs

Neither health professionals nor patients can do it alone.

Let’s make no mistake: We are here to participate and to help!

e-Patient Dave original story of the health data transfer from his hospital EHR to Google Health PHR is remarkable in many ways and shows why participatory medicine could well be one of the fastest way to lower the overall cost of health care by helping fix some specific dysfunctions in the system. It took just one active and engaged patient to produce a remarkable change in the way interoperability between EHR and untethered PHRs is going to be defined at BIDMC and probably at HITSP, at a minimum.

In other words, one single real event, driven by a patient has given more effective feedback to improve the national standards than years of deliberations of the cream of the cream in HIT in their rarefied tower of knowledge.

It shouldn’t come as a surprise! Our dear friend Tom Ferguson, MD understood long ago that health professionals really can’t do it alone anymore. Month after month, year after year, we discussed the growing number of examples showing that invariably better outcome came from the active and engaged participation of the patients in their care. This, of course, could only happen in tandem with a drastic change in the model of patient-doctor relationship.

It almost always started to happen one patient at a time. One exceptionally engaged and informed patient, asking the right questions, navigating the medical maze of his/her particular condition, then communicating with others about his findings and in the process creating a community of hundreds and then thousands of patients. That is exactly how KIDNEY-ONC, the ACOR social network for kidney cancer was created by Steve Dunn, soon supported by Robin Martinez. That same KIDNEY-ONC that Dave calls his life-saver.

Isn’t it ironic that e-Patient Dave is now in the same position Steve Dunn was 13 years ago? Just as Steve had to convince many health professionals that his expertise was real and that he shared the goals of doctors to improve care, so does Dave, who has to constantly remind every one that his engagement is POSITIVE and that his goal is to work, in concert with the professionals, to improve, facilitate, accelerate the implementation of and, optimize the quality of untethered PHRs.

To some of us, it was clear, in the early days of the public access to the internet, that the switch from the paternalistic to a deliberative model of patient-doctor relationship was necessary to bring in the patient community and maximize their impact to improve care. Just as today it has become clear that we will never be satisfied until the EHR/PHR experts proactively involve e-patients to redefine/improve the current schemas. As Ben Adida wrote this morning, you must put the patient squarely in the feedback loop.

David Blumenthal, the newly nominated National Coordinator for Health Information Technology, will lead President Obama’s health information technology vision and will be the person charged with implementing the HITECH act, dispensing the $19 billion attached to the act. It is a fundamental role. He very recently wrote a “perspective” article in the New England Journal of Medicine about stimulating the adoption of EHR:

The nation’s economic woes have given birth to an unprecedented federal effort to modernize the information systems of a troubled health care system. It is now up to the government and the nation’s health care professionals and facilities to turn this opportunity into real improvements in the health and health care of Americans.

Unfortunately in this early vision, Dr. Blumenthal doesn’t mention any role for the growing number of informed and engaged patients. I hope that Dave’s story will change this. John Halamka (A BIG thank you for his willingness to be so responsive!) has shown that even the top experts can be convinced to change at a rapid pace.

As Jane Sarahson-Kahn writes today:

The $19 billion is not about electronic health record technology in and of itself. It’s about patients, health providers, their communities and connectedness. The latter is the raison d’etre of HITECH, not converting patient data from a paper file into a digital format. It’s about the connectedness and exchange of that data around the community for patient, provider and community benefit.

What lays ahead of us are very important decisions that will probably have profound influences on the methods used to reform/create the healthcare system of tomorrow. The US could easily fall back into the usual attitude of reforming within the dysfunctional system, not involving the patients, without whom, we must remind everybody, there would be no reason for medicine to exist and use 17% of GDP.

Already the battle lines are starting to be drawn. Do patients have the right to fully control their PHR and to require full data liquidity & interoperability. Or must we rely on tethered PHRs where only a portion of your health records will be made available to you? I believe the Nation should follow Rahm Emanuel’s now famous:

You never want a serious crisis to go to waste!

The best way to follow this glorious advice would be to involve e-patients, just as the DOD decided early on to involved breast cancer patient advocates in the BCRP program (now in its 10th years and the second largest funder of breast cancer research) to create:

  • Advocate participation in all levels of decision-making;
  • Limited bureaucracy that allows the program to be flexible and respond efficiently to emerging issues and public concerns;
  • Innovative Developmental and Exploratory Awards (IDEA grants) that have been critical in responding to new discoveries and encouraging innovative, risk-taking research;
  • Innovator Awards that are designed to recognize individuals, rather than projects, from any field of study by providing funding and freedom to pursue creative, potentially breakthrough, research.

There are many non-health professionals who understand a thing or two about data! Let’s embrace the idea of their active participation and we shall see a significant improvement in today’s systems. We are certainly not among those who profess that today’s systems have an “…ability to almost create a dreamlike world of health care perfection in which the work of doctors and the care of patients proceed with barely imaginable quality and efficiency…” But we are also not those who consider that too many patients do not have the education, cultural or intellectual capabilities to benefit from PHRs. On the contrary, some of us, founders of the Society for Participatory Medicine, believe that there should be no limit to the health data made available to individual patients, just like we believed 15 years ago that there should be no limit to the medical information made available to the patients. It should be entirely a question of choice. Let’s make the data available and let the individual patients decide the level of complexity they are comfortable with.


Posted in: hc's problem list | medical records | policy issues | reforming hc | trends & principles




13 Responses to “Applying Participatory Principles to EHRs/PHRs”

  1. New post on Applying Participatory Principles to EHRs/PHRs

  2. That’s pretty much what I wrote here – but of course much more eloquent. Congrats, Gilles.

  3. SusannahFox says:

    Bravo @gfry New post on Applying Participatory Principles to EHRs/PHRs

  4. Gilles, I don’t know where you come up with these things, except that your head is full of an enormous amount of stuff.

    Everyone, I urge you to review the “four models” article that Gilles barely mentioned in passing. It’s a bit deep, but that’s Gilles for you. :–) The screen shot in the middle, summarizing the four models, captures what he’s talking about in the shift from “paternalistic” to “deliberative”: in paternalistic the physician’s role is Guardian; in deliberative it’s friend or teacher. How wonderful.

    I want to triple-underscore something that sometimes gets lost in considering how much patients can “handle” intellectually. Some people feel strongly that it’s the physician’s *job* to comprehend all this stuff, and the patient’s natural role is to accept the digested wisdom. I have no objection to either of those when that’s what each person wants. But I want to point out that both my surgeon and my oncologist were absolutely at the top of their trade, and both of them completely support my knowing as much as I want, and they always speak to me with complete respect, even honor.

    Participatory medicine has nothing to do with dominance or lack thereof. It is, exactly as Gilles says, a partnership – because neither patients nor professionals can do it alone.

    Physicians are under enormous pressure these days. Willing patients can contribute a lot more than some people think. Let us.

  5. Dave,

    I didn’t want to insist too much originally on the four models of patient-doctor relationship but as you have surmised this is probably something that will really help us frame better what we mean by Participatory Medicine and how it fits with the cultural and ethical changes that are happening in the American society and that the Pew Internet & American Life Project is cataloguing.

    I discovered the theory of these four models while reading about medical ethics. The authors of the concept are none other than Linda & Ezekiel Emanuel, wife & husband and among the most well known medical ethicists. Dr. Ezekiel Emanuel, formerly an oncologist at Dana-Farber, has been since 1998 Chair of the Department of Clinical Bioethics at the Clinical Center of the National Institutes of Health. Dr. Emanuel, is currently a special adviser to the budget director, Peter R. Orszag. He is also the older brother of Rahm Emanuel, the White House chief of staff. I can only recommend a very recent Times article about this amazing doctor and ethicist, who obviously gets it!

    All of that to say that we have the truly unique opportunity to convey to senior officials in the new administration that e-patients, who exist in much larger numbers than usually thought, understand what is at stake and what it will take to operate the necessary changes. Particularly since senior advisors have been promoting for a long time the value of true autonomy for the patients.

  6. […] EHR and untethered PHRs is going to be defined at BIDMC and probably at HITSP, at a minimum.” Article Gilles Frydman,, 20 April […]

  7. Lodewijk Bos says:

    Allow me to point once more to the guideline on patient record access as was recently sent to the board of the WHO:

  8. I recommend the Times article that Gilles cited. I especially love the comment by an observer about some of Dr. Emanuel’s positions: “These are mighty spicy ideas — the opposite of what any politician would say unless he was completely intoxicated.”

    Mind you, I haven’t dug into them – I just love the idea of people thinking in terms that no politician would dare voice.

  9. RT @SusannahFox: Bravo @gfry New post on Applying Participatory Principles to EHRs/PHRs

  10. Hmmm!

    It looks like all of a sudden CCHIT is ready to move in the right direction. I wouldn’t be surprised if it is a direct consequence of e-Patient Dave experience:

    “CCHIT certification is based largely on whether a system can exchange information with systems sold by other companies, and on whether a system includes certain functions.

    But simply having a function isn’t enough, Dr. Blumenthal said: “We need to ensure that physicians can actually use it.”

    Mark Leavitt, CCHIT’s chairman, says the group is considering adding the real-world experiences of end users into certification decisions.The stimulus legislation doesn’t specify whether CCHIT should be the group to certify electronic-records systems, but Dr. Leavitt says the group is open to modifying its certification requirements.

    Excerpt from the WSJ:

  11. ePatientDave says:

    @DaphneLeigh @healthblawg see excellent @Gfry post about paternalism moving to partnership

  12. @ePatientDave This is great — thanks for sharing.

  13. says:

    RT @DaphneLeigh: @ePatientDave This is great — thanks for sharing.

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