What do YOU want from the Society for Participatory Medicine?

We (the people on our banner graphic) are at the annual e-patients.net retreat – which, this year, is the board meeting of the Society for Participatory Medicine.  Whether or not you’re a member yet (join here), we want to know: what do YOU want the Society to do?

Our first year was semi-focused – we published a GREAT batch of initial essays in the Journal of Participatory Medicine, but we haven’t done nearly the amount of work we’ll do in 2010. (Some of you have been banging down our doors trying to get things started; now’s the time.)

Here’s the purpose we drafted today:

To accelerate change in the culture of healthcare to a more participatory model, through leadership, advocacy, information and tools.

That’s why we’re here. Whether or not you’re a member yet, what outcomes do you want? What result do you want us to create in the world, that’s worth joining for?


Posted in: Why PM




33 Responses to “What do YOU want from the Society for Participatory Medicine?”

  1. ePatientDave says:

    Talk to the Society for Participatory Medicine board retreat: what do you want the Society to do? http://is.gd/9gZ7z

  2. ePatientDave says:

    That's RIGHT NOW, tweeps. Talk to the Society board retreat: http://is.gd/9gZ7z

  3. SusannahFox says:

    What do you want the Society for Participatory Medicine to do next? http://is.gd/9gZ7z (I'm not at the retreat, but I'm interested.)

  4. Pete says:

    I’d make it a goal to establish evidence on the efficacy of “informed participation” (i.e., participatory medicine) versus “uninformed participation” (i.e., the placebo effect). There is growing awareness of the impact of the placebo effect in medicine and “uninformed participation” — where patient participation in clinical research has an impact on outcomes because of (false) hopes — has a deleterious effect on research. Comparative effectiveness can address this, but it is insufficient. I’d guess that there would be a great path to NIH or AHRQ funding an investigation of the hypothesis that participatory medicine can mitigate the placebo effect or at least harmonize the placebo effect across cohorts. The biggest danger of the placebo effect in research is the impact that it has on the variability in outcomes… perhaps there is a way that you can, via better engagement, reduce the variation so that the controlled variability of the study variables is less obscured by differences in patient variables.

    I think that you’ve got to establish efficacy of PM through research rather than clinical practice. There are two ways to do this: either through science (as I outline above) or from an engineering perspective and study PM in a “total quality” approach.

    A thought from a research-focused stakeholder.

    • Terrific, Pete – thanks!

    • I will find such a study interesting to read for its design as well as its results.
      In the meantime though I will continue to be highly self-responsible for my own health through my and (mostly) my husband Paul Wakfer’s study of the scientific literature. And for those very few occasions when we have reason to consult a physician, we will fully participate, having done our own research first (and more later if warranted), and then make the decisions, primarily because it is our own bodies *and* we are self-paying clients.

  5. ePatientDave says:

    @pjmachado So comment on what you want us to do – please! We're looking for input RIGHT NOW http://is.gd/9gZ7z

  6. ePatientDave says:

    @Zorg20 Hey you: tell the SPM board meeting what you want. RIGHT NOW. http://is.gd/9gZ7z

  7. amnews says:

    RT @SusannahFox What do you want the Society for Participatory Medicine to do next? http://is.gd/9gZ7z (

  8. Sorry Dave I had tweeted this suggestion, did not realize you wanted it on this site…

    Hello @ePatientDave -I would like to see your organization work with other like minded organizations to develop pilots/tactics that will move the needle on patient engagement and to share the results with everyone so that we can show that not only being an epatient matters but everyone can become an epatient. Many organizations are working on pieces of this on behalf of the patient, it would be great to have you be the patient clearing house of all of this work!
    Have a great meeting!
    Paulo Machado

  9. ePatientDave says:

    Fascinating @PNSchmidt suggestion for @S4PM: develop evidence of efficacy of "informed participation" http://is.gd/9h6aM

  10. John O'Brien says:

    It would be great if you tightened your mission and decided to what extent you will/won’t be influenced by commercial sources. Your voice will be a powerful one; please ensure it remains a reputable one.

  11. @marinic says:

    would like SPM to look also at the other side of the Atlantic; in Europe, PM is still some kind of innovation that no one yet understands what it really is and how it should be carried out. What skills health professionals and patients should bring to it.

    Relations of patients and health professionals in PM should invented, and made widely known through paradigm and not abstract notions. We are still in the patriarcal medicine era and we need to be taken by the hand to get out.

    This was also one of the lesson learnt of the 4th Global IAPO Congress in Istanbul this week.

  12. Sandi says:

    I support fully Participatory Medicine – informed or otherwise. We were all uninformed at some point. I am very hopeful that PM will always stay with the needs of the Patients, first and foremost, recognizing that it is easy to fall into the bureaucracy ‘traps’. People change, mandates get revised, $$ become an issue…..I guess I am thinking of how to put in place a mandate to ensure this does not, at some point, get side tracked in its philosophy??

  13. Rob Havasy says:

    Continue with education on the basics of being an engaged patient. How to interpret statistics. How to conduct research both on the Internet and in person (hospital libraries are a tremendous patient resource). And how to be credible enough to engage with a reluctant provider. SPM can conduct an e-patient school of sorts. (Please forgive my typing; I’m engaging from a moving train on my iPhone) :-)

  14. I’d love to see the rare disease community come together — would love to see a global registry of registries so that maybe someday I can know that the medical decisions I make for/with my son aren’t terrible ones (off-label medications for pain, etc. etc.) — in rare, you just don’t ever really know (the experts don’t even really know) — can be scary as a parent.

  15. ellen hoenig says:

    I love your purpose statement; though might you consider a stronger word than information? My concern is that there is so much information out there for patients… it needs to educate or motivate change to help you fulfill your mission…

    For outcomes, might you consider designing ways to encourage patients to take on greater responsibility for their health and that of their family? To identify and encourage new ways for patients and their families to participate and initiate pilots in order to begin to create a data base of what works? To encourage greater participation in prevention and not just health after there’s a serious diagnosis? Encourage more registry’s for each disease and condition so that future patients can have better data and direction to follow when diagnosed…Good luck! :-)

  16. ePatientDave says:

    @ChristineKraft I would LOVE your suggestions for what SPM should deliver this year! http://is.gd/9gZ7z

  17. Please make sure you always include mental health in your thoughts. I find a lot of organizations forget about mental health, or think it is not as dire as, say cancer or other potentially fatal diseases, so they don’t make sure to include it. (not SPM, necessarily, but you know what I mean) I see a lot of Health 2.0 and e-patient discussions or conferences where mental health patients are not represented.

  18. @epatientGR says:

    Just coming fresh out of a capacity building congress on engaging in health policy, a parameter of which is participatory medicine (since if you ask for participation on the healthcare decision making on the public level, then as an individual or as a patient org you practice or advocate for participatory medicine). The lessons learnt from the congress are among other:

    -patient orgs and individual patients need to learn and get to grasps with many things before embarking on participatory medicine and health advocacy
    – skills needed:
    – health literacy to understand what the doctor says,to understand need for and use of various diagnostic tests and therapies, to search for additional or complementary information and to evaluate experiences of other patients with similar diseases
    -digital literacy: despite the fact that digital literacy in the USA grows quickly, it is not so everywhere in the USA (not among lower socio-economic population strata including migrants) nor in other parts of the world and particularly among the over 50s populations.
    – lobbying and communication skills: even long standing and financially well-off patient orgs lack these skills. In several parts of the world, patient orgs do not even consider entrusting these functions to outsider paid professionals. There is a cultural(?), ethical (?) gap between how american and orgs in other parts of the world think and operate on health advocacy matters
    – grassroots advocacy is not understood out of its american context: as it a powerful advocacy tool, there is need to draw on the american experience and best practices to develop concise grassroots advocacy guides for different parts of the world
    – tools adequate for low literacy or illiterate populations have to be devised so that they too can address health issues or advocate for their rights in healthcare
    – education in participatory medicine needs to start early: at school for consumers and be taught as a core in medicine schools around the world
    – participatory medicine becomes slowly a topic worth discussing among key health advocacy issues although still not a priority for world regions lacking adequate healthcare services
    – participatory medicine needs to educate all stakeholders (health professionals, patients, carers, family members, healthcare decision makers, academicians, health industry, world health orgs) in order to reach a common language and common understanding about how to go about it
    – current economic situation or expected worsening economic situation might seriously affect delivery of healthcare services and intentions of participatory medicine-how this can be remedied?

    These are my thoughts after discussing with several participants from all parts of the world and representing both patients, industry, health orgs. Would appreciate to hear what you think as practical, low cost solutions to get the ball rolling till major changes are undertaken.

  19. ehealthgr says:

    RT @epatientGR: Think and answer NOW-What do YOU want from the Society for Participatory Medicine?http://is.gd/9gZ3S How do YOU think yo …

  20. I think that the study that Pete proposed on 2/26 would be extremely difficult if not impossible to design. However, I think the following alternative would be both possible and informative toward the same end:
    Make an analysis of (at least middle age, ie. =/> 50yo) healthy people (with a clearly defined criteria for “healthy”) to determine how much they participate in their own health maintenance/care. Types of participation would need to be clearly defined, but would include being knowledgeable/informed and even possibly financially responsible, and criteria for evaluating the degree of each type of participation would be needed.

    Yes, such an evaluative or descriptive study would not establish the efficacy of participatory medicine”, but it would at least establish that participation is highly correlated with good health, and perhaps even enable analysis of which types of participation are most related to good health. These results alone should therefore be persuasive for individuals who are open to ideas for improving their own health.

  21. What do YOU want from the Society for Participatory Medicine? | #hcn #epatient #healthcare | http://ping.fm/ABkM4

  22. Alexandra Albin says:

    I know I am a little late in this, but here are some thoughts.

    1- How to help patients w/ those diseases that are rare, diseases where there are few support/ information groups. I think their voices are more muted. Develop a guide for them to find resources.

    2- to address the issue of informed participation. For newbies, a step by step guide how to be an informed participating patient. How to weed out the good (quality) data from the mass quantity of data. Where to go to sources for good data. This can be developed with a consortium of folks.

    3-Develop a guide/support of how to get your records.
    4- Develop a guide of how to deal with insurance bills/challenges.

    As you can see I am stuck on step by step things…with an eye to those who may feel more or less empowered. have at it. Best AA

  23. I would like to see the SPM focus on the patient as “team leader”, with their advocates, their physicians, and other healthcare professionals as team members dedicated to better patient outcomes.

    The team needs ways to easily and efficiently come together to review progress, treatment, alternatives, new evidence, etc., at appropriate intervals.

    I would like to see SPM work on how to overcome the barriers to teamwork, how to prove that teamwork leads to better outcomes and provide guidance and tools to facilitate teamwork.

    The informed and empowered patient is ready to embrace team leadership. But the less Internet savvy patients need to be reached out to and educated. They need to know that it’s not about mastering every new technology gadget, it’s about taking control of decisions and getting what they need.

    And there are barriers to getting participation from physicians. As everybody knows, doctors can’t bill for phone calls. But most still make them, the good ones, anyway. And many communicate electronically with patients. What if it was faster, easier and more effective to communicate as part of a multidisciplinary conference? Certainly there are some doctors who will never join Health 2.0, out of inertia and/or lack of time and/or lack of reimbursement. But attitudes could be changed if the benefits could be demonstrated, in terms of outcomes, time and money.

    Hospitalist physicians (those taking care of inpatients) are just now beginning to institute a multidisciplinary team approach to the care of hospitalized patients. From the February ACP Hospitalist, copyright © 2010 by the American College of Physicians (http://acphospitalist.org/archives/2010/02/team.htm) is this article discussing how daily meetings between physicians, nurses and social workers improves outcomes for patients and describes the implementation of procedures to improve communication on inpatient services in St. Louis, San Francisco and Philadelphia. These kinds of programs take the dedication of the team members and are just now being implemented in the inpatient setting in hospitals in this country.
    My favorite quote: “Good Communication Doesn’t Just Happen”.

    If doctors are just starting to meet with nurses and social workers in the inpatient setting, it can be no wonder that a team approach, including the patient, in the outpatient setting can seem far-fetched. But, it shouldn’t.

    Participatory medicine may have developed because medical information became more available via the Internet, but participatory medicine should be more about changing attitudes than changing technologies. It should be about bringing patients, doctors, advocates and other healthcare professionals together for better patient outcomes. The SPM is perfectly positioned to educate these stakeholders, study various formats, tools and methods of collaboration and communication, and hopefully to prove that the participation of all these stakeholders leads to better patient outcomes.

    • Janeen, I especially like your recommendation for the focus of SPM – “the patient as ‘team leader’ “. This puts the major attention exactly where I think it belongs – on the patient/client him/her (hir) self. For this however, I think it is essential that each individual come to understand that s/he must take responsibility for hir own health and not try to delegate that responsibility to a physician or other healthcare provider. It is not reasonable to expect that a physician or other healthcare provider is going to have the degree of interest in an individual’s own health as that individual does hirself (or the degree of evaluation of that individual’s preference structure that s/he hirself can have). It is not necessary that every individual become hir own physician, but it is definitely important for every individual – as hir own “team leader” – to have at least a moderate amount of knowledge about how hir own particular body works and what actions in general are beneficial and/or detrimental. (Young children are normally curious about their bodies and are receptive to information provided as they ask or otherwise indicate desire to know. Building on this should be a major part of every young person’s education and could even be the foundation – I and my husband have named this educational approach “Body Centered Learning”.)

      I will go further than many and say that those who have a financial interest in their own health – they pay directly for general health provider services (considered part of their budget, set aside/saved regularly) and have arrangements (eg. *true* insurance – which is financial protection from rare negative occurrences by pooling the risk among many individuals) for emergencies or catastrophic health issues, rather than prepaid health services. The typical “health plans” with very low or no deductibles provide an environment in which self-responsibility is discouraged – akin to the lack of self-control regarding food consumption that is seen with a large number of people who frequent fixed price all-you-can-eat buffets.

      I strongly agree that “the informed and empowered patient is ready to embrace team leadership” – with “empowered” including already acquired self-responsibility, since the person who understands that hir body *is* hir own responsibility *will* empower hirself. S/he will take the action to be and stay informed and make decisions for staying or becoming healthy. So in conjunction with your desire to see SPM reach out to “less Internet savvy patients” – and I would include ones who are Internet savvy, but do not use it in regards to their own health – I urge that the education include emphasis on the need for individual self-responsibility, the concept that I think is at the heart of true participatory healthcare/medicine.

      Lastly, a comment to your statement, “doctors can’t bill for phone calls”… I think it is important to keep one’s thinking “green hat” rather than limited to the current “health plans” restrictions of insurance companies (regulated heavily by government). Physicians and other health care providers properly should be remunerated for telephone (and email) communication in which they partake as part of the health care services arranged for and provided to the “team leader” patient. This could be part of contractual agreement directly between the patient and provider(s) or the patient could return separate value to the provider equivalent to the value the patient assesses that s/he received from the telephone/email communication. An extension of the phone/email communication from a single healthcare provider to a patient could be an email list between a single patient/team-leader and the healthcare providers associated with hir management of hir health issues. This last might also make use of realtime video conferencing or simply video email attachments (or uploads to a “team” information/records repository). There is much that can be done to improve access and exchange when one’s attitudes break free of current limitations, which are mostly the result of government regulations and the strait-jacket thinking of those who uncritically accept those regulations.

  24. David Collin says:

    I posted a list of 8 things I’d like to see the Soc for Participatory Medicine do to my blog: http://wp.me/pmSiA-au

    • Excellent, David. I encourage everyone to click the link and view your full text.

      And David, you’re on – how much of this can you help implement?

      To keep everything together in one place, here are David’s line items, minus his thoughtful detail:

      1. Develop an actionable plan for the goal of enabling all people to become his or her own primary care authority for 90%-95% of health incidents.
      2. Develop a plan for building a well-developed, well-funded information support system specifically to support lifelong personalized health learning and decision making.
      3. The integrated health knowledge network suggested in iten 2 should take a systems approach to human biology and medicine.
      4. The approach to participatory medicine should be founded on the principle that learning about health is a lifelong matter.
      5. Facilitate the evolution of an open sytem of quantifying sensors and devices that measure many aspects of bodily function, health status, fintess, consumption that can be seamlessly integrated with the knowledge network, EHRs and informed by personalized health models.
      6. Drive a counter-culture movement that encourages the US population to reset its expectations of the market economy from tollerance of the current state of health irresponsibility to one of health-benefit.
      7. Advocate for the funding developemntof human biological system models that can be personalized so that a constant stream of information may be analyzed and used as a source of near-real-time feedback about our health status and behavior.
      8. Work to support augmented reality development for an environment that will enable us to get information on-the-fly about what our options are for the things we eat and drink.

      Again, I encourage you to click through and read David’s detail.

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