Category: Participatory Medicine

Collaboration, cooperation, democracy

Everybody’s head is a strange universe filled with echos of voices they’ve heard over and over again. Against this, we try to manifest our intentions, to persuade with more voice, more conversation. Sometimes we get through, but even when we get through, we’re often filtered, just as we’re filtering. Is it any wonder that it’s so difficult to build and sustain an effective collaboration?

I’m looking at the ways that we strive to aggregate our attentions, find common ground, and work together. Over the years I’ve approached this through the lens of democracy, or what I’ve referred to as the “democratic intention” to create a participatory process that works. The older I get and the more I think about it, the more I realize that this intention, though we so often profess it, is actually rare. Most of us would really like to assert our self interest, our own preferences, but society is a collision of interests and preferences, we have to give in order to take. In a recent discussion of the book The Evolution of Cooperation by Robert Axelrod, I was struck by the hardwired assumption that self-interest inherently rules, and cooperation is reached most effectively with an understanding of that point, thus the prisoner’s dilemma. In fact, I find that real people are fuzzy on that point, they’re not necessarily or inherently all about self-interest. We’re far more complex than that.

There’s a force of democratization in this world that I suspect is an inherent effect of two factors, population growth and density (which forces us to socialize and co-operate) and human evolution (hopefully we’re growing wiser, more capable, and continuing to adapt). I see aspects of it in work that I do. My internet work is often about building contexts to bring people together for shared experience and collaboration. At the Society of Participatory Medicine I’m involved in communications, and the concept of participatory medicine is driven by a democratization of health information and process. In politics I’ve focused on grassroots emergence, ad hoc and headless organizations, methods for effecting and enhancing participatory culture and activism. In thinking about markets, I’m drawn to the Cluetrain Manifesto and Doc Searls’ current Project VRM, or vendor relationship marketing, which is about giving consumers tools for symmetrical power within the vendor/customer relationship.

I’m thinking about all this in the context of my ongoing fascination with culture, media, and the Internet, and developing thinking that might feed into several interesting projects here and elsewhere. One thought I had was about a potential revival of Extreme Democracy and new conversations about emergent democracy. These are potentially lush gardens of thinking and doing that at the moment are barren, having been untended for a while.

Self-Diagnosis and Participatory Medicine

The Journal of Participatory Medicine has published an interesting piece on Self Diagnosis, subtitled A Discursive Systematic Review of the Medical Literature. It’s a complex subject – as patients become more informed and empowered, they are more liable to want to have a role in diagnosis, and more apt to question a doctor’s perception or framing of their condition. This isn’t new for some of us – thirty years ago I was disagreeing with my physician to the extent that he would prescribe to treatments, one based on his assessment and one based on mine.

The systematic review published in the JOPM turned up 51 articles, of which 38 were suitable for inclusion in the review. There are three assessments of self-diagnosis: that it’s reliable and desirable (31%), that it’s not reliable but still desirable (23%), or that it’s neither reliable nor desirable (29%).

I’m sure the assessments depend to some extent on context and personality, which varied in the papers assesed. One significant problem considered in the discussion is that “self-diagnosis obviously challenges the authority of medicine, an authority which may already be in decline.”

A decline in medical authority is not necessarily a bad thing, even from medicine’s perspective. The notion of self-care and the changing nature of the doctor-patient relationship have been lauded as positive changes in the health system.

The article goes on to discuss how the patient/doctor relationship was historically “characterized by an authoritative, paternalistic doctor managing the care of the submissive patient.”

With respect to patient self-diagnosis, the modern patient clearly would participate in diagnostic decision making, but not necessarily with ease. The ability to assess quality and reliability of health information is not necessarily within the grasp of most lay people, presenting a difficulty on two fronts. On the one hand, any attempt to mediate access to information, or to recapture control of its delivery will infringe upon lay autonomy, returning the patient to the paternalistic care of the omniscient physician. On the other, consuming information without adequate understanding results in individual vulnerability for both patient health and the doctor-patient relationship.

I think this gets to the challenge we face in advocating participatory medicine, but the same challenge is inherent in any democratization of knowledge: to participate, you have to be able to make informed decisions – you have to be informed, and you have to be capable of understanding the information that’s accessible to you. The real source of empowerment may be, not just in the education and participation of the patient, but in the mutually empowering relationship of physician and patient.

The article concludes “that there are no clear binaries to guide the incorporation of self-diagnosis into contemporary health management.”

It is a complex matter, because it is a relational one, tightly bound up in the ways lay people and doctors position themselves and interact relative to one another and relative to particular disease categories.

Journal of Participatory Medicine – new version

As a cofounder of the Society of Participatory Medicine, I’m psyched to see new work appearing in our journal. Here’s a press release with more info:

The Journal of Participatory Medicine (JoPM), the online peer-reviewed, open access publication of the Society for Participatory Medicine, has released new content for its 2010 volume. The journal’s mission is to transform the culture of medicine from a delivery system driven by clinicians to a shared enterprise, by publishing content that demonstrates whether and how patient participation helps to achieve better health outcomes. JoPM presents articles and multimedia content by both health care professionals and consumers, in keeping with participatory medicine’s cooperative health care model that encourages, supports and expects active involvement by all parties.

Building on the foundation laid by the inaugural volume, which explored participatory medicine’s parameters and challenges, the new volume examines the merits of specific approaches and tools of participatory medicine. Topics include shared decision making in a clinical setting, patient participation in medical evidence gathering, the pros and cons of consumer health information technology, and more. One of the Co Editors in Chief, Charlie Smith, noted: “Starting a new journal in a field that is still evolving requires patience and persistence. From last year’s beginning, I envision the JOPM will continue to gain momentum, becoming an authoritative source of information for both professionals and the public about how Participatory Medicine contritbutes to optimal health care outcomes.”

JoPM publishes continuously, posting content as soon as it is ready for publication, and is available free of charge. The editors are still accepting submissions for the current volume. Prospective authors may view the journal’s submission guidelines at www.jopm.org/submissions.

Unanswered questions about e-patients

Susannah Fox has posted two sets of questions about e-patients, sent by Liav Hertsman and his colleagues at Tel Aviv University, that call for further research.

First set:
1. How would you describe the typical online active e-patient in terms of demographics?
2. In which stages of the diseases do e-patients usually need medical information the most? Why?
3. In which stages do they search for information about drugs?
4. How substantial is the e-patients’ drug search in comparison with their overall search about health?
5. How dominant and reliable is user-generated content (UGC) information in the eyes of e-patients?
6. Do e-patients who are interested in UGC also tend to cross-check the information, using professional sites or do they tend to rely solely on the UGC? Why?
7. What do the e-patients value more, specific information or general information? Is it treatment stage related?
8. In your opinion, should a health site offer diverse information or focus only on one area of expertise? Why?
9. What tools are important to have on a health site (i.e. communities, experts’ reviews, doctors’ ratings, drugs’ ratings, etc.)? Should a health site offer several tools? Why?
10. Do e-patients prefer a one-stop-shop site, where they can find every information related to health and every tool they need, or do they prefer to gather information from several sites, each with a specific specialization?
11. What causes an e-patient to return to a specific health site?

Second, followup set of questions:
1. Are there any specific studies related to online behavioral health resources that you might recommend?
2. Are there any specific studies directly related to the use of online health assessments?
3. Are there any specific studies that might support or refute the merits of utilizing online health resources for mental/behavioral health issues?

Note very useful comments below the post.

Good medicine

E-Patient Dave deBronkart
E-Patient Dave deBronkart
Just three years ago, my friend Dave deBronkart’s life changed with a routine x-ray that showed a troubling shadow on his lung, which turned out to be the result of a metastaszied stage IV, grade 4 renal cell carcinoma. Prognosis for long-term survival was dismal, statistically: median projected survival time was 24 months.

Dave, an online maven and communicator who consumes and shares information and builds his knowledge base with real intensity, immediately looked online for information about his disease. He joined the Association of Cancer Online Resources (ACOR), and started an online journal at CaringBridge.

I met Dave through colleagues in the e-Patients Working Group that the late Dr. Tom Ferguson formed, a group that became founders of the Society for Participatory Medicine. Participatory medicine emphasizes the active role of the patient in the process of medical treatment. This is more possible because of the Internet and the emerging, evolving abundance of information and information channels. Before, a patient’s exposure to healthcare knowledge was mostly at physician or hospital touchpoints that were inherently limited in duration. There was no great way for patients to study their conditions and find others with the same or similar conditions, getting similar treatments. If you did find and meet one or two others with the same condition, there usually wasn’t a facility for comparing notes and data. With the Internet, that’s all changed. (Tom Ferguson saw this coming in the early 90s, which is when he and I met and started talking).

I could write much more about participatory medicine and the concept of the e-patient, but I wanted to say more about Dave. Wendy White at Sirensong posts about a recent study of empowered patients. A key finding: “Personality traits seem to play a much stronger role in patient empowerment than education, income or source of health insurance.”

The study found that empowered patients have: “a high need for cognition, which means that they’re not happy with simply knowing a particular prescription successfully treats their condition, they want to know why it works. These people want to understand not only their condition but their treatment options.”

This definitely sounds like ePatient Dave, and reading it made me think of another Dave characteristic: When he found out he had stage IV cancer, Dave didn’t let it define him. He didn’t become a person who was dying, any more than anyone else. He was still Dave, confronted by a challenge, and intent on finding his way through it.

I remarked a couple of days ago that a disease seems to become terminal when it’s discovered. I might have meant that contact with the healthcare system and its treatments can kill you faster than some disease, and I think I’ve seen that before, with my father, who had colon cancer and would have could have lived well and longer had he not agreed to surgery. (That’s 20-20 hindsight, but it’s accurate.)

But I also suspect that we can think ourselves to death. I’ve come to believe that our internal conversations set a path, drag or nudge us in a particular direction. If you want to live longer, it’s probably best not to spend too much time thinking you’re dying (though we all are, of course, at least evidence suggests that’s the case.)

I’m pondering all this as I plan what I’m going to say when I speak to a patient advocacy group a week or so from now. I’m talking about patients and social media, how our web conversations and access to information are transforming medicine, changing what it means to be a patient. I think we’ll see more patients like Dave deBronkart, jumping into their treatment with both feet, learning everything they can about their conditions, finding or building communities of support and hope. This is the real “healthcare reform,” I think.

Project VRM and e-patients

I’ve been talking to the Project VRM group about healthcare applications of vendor relationship management, also related to the work of the Society for Participatory Medicine and the e-Patients Working Group that preceded it (of which I’ve been a founding member).

Doc Searls and I were talking about this again last week at Fiber Fete; he’s just posted a note about Dave deBronkart’s “Gimme My Damn Data” rant and its implications (expanded and well-overviewed by Dave along with Vince Kuraitis and David Kibbe) to the Project VRM site. Doc takes issue with the use of the word “consume” in the longer piece by Dave et al:

Patients today no longer only consume. They produce. What they want and need is more responsibility for their own health care. More importantly, a patient cannot be a platform if he or she is only consuming. By nature and definition, a consumer is a subordinate creature. It lives downhill from the flow of services. Platforms stand below what they support, but are not subordinate. They are the independent variable on which the variable ones standing on it depend.

Tapscott: the healthcare reform battle

Don Tapscott explains why healthcare reform is going to be hard, a huge battle, and we shouldn’t be surprised to see the shouting and worse. But we might still see a real change, because citizens can organize like never before. [Link]

There is no possible compromise on health care and the myth of Obama as a “post-partisan” president is exactly that – a myth.   The health care industry generates billions of dollars in profits and many people are seething that these profits might be curtailed.  This issue can never be negotiated in Washington back rooms as there are huge interests vested in the status quo – such as the big insurance companies, health maintenance organizations and pharmaceutical giants.  Like many social changes, for this one there will be winners and losers and an historic battle will determine the outcome.

As Obama noted in his message to supporters, “In politics, there’s a rule that says when you ask people to get involved, always tell them it’ll be easy. Well, let’s be honest here: Passing comprehensive health insurance reform will not be easy. Every President since Harry Truman has talked about it, and the most powerful and experienced lobbyists in Washington stand in the way.”  But this time Obama has what those presidents lacked:  the Internet and a powerful social movement that potentially can shift the relationship of forces in America away from the traditional entrenched interests towards the needs of the population.

Kevin Kelly on Participatory Medicine

I’m part of the Society for Participatory Medicine, and we’ll soon be publishing the Journal of Participatory Medicine. (We already have a very active blog at e-patients.net.) Kevin Kelly posted a nice summary of our intentions at The Quantified Self:

The newest channel in this effort is the launch of a peer-reviewed science journal dedicated to research in the field of “participatory medicine” — as in patient participant. (Sometimes labeled Health 2.0) There is a great overlap with self-tracking and the quantified self (although by no means is all self-tracking health related), so I think this new journal will appeal to self-trackers and self-trackers to the patient-participant field.

This journal, called sensibly enough, the Journal of Participatory Medicine, will use an open source model (no fee to get the articles) which is both very much in the spirit of the paradigm, but also very future-proof (free is where all journals are headed).