Jon Lebkowsky is a social media consultant and cofounder of the Society for Participatory Medicine. He was also the co-founder of FringeWare, Inc. and EFF-Austin, co-edited Extreme Democracy, and is a regular contributor to WorldChanging. You can read his blog here and follow him on Twitter here.

Klint Finley: Let’s start off by defining what “participatory medicine” is.

Jon Lebkowsky: There’s a good definition on Wikipedia:

Participatory Medicine is a model of medical care in which the active role of the patient is emphasized.” It can be patients coming together in communities dedicated to a specific disease or condition, or it can be patients being considered peers within treatment teams that are treating their conditions.

The Internet makes it more possible, in that patients can find much more information about their conditions online, and they can find each other.

You’ve been involved with online communities for many years, how did you get involved with participator medicine?

Through my relationship with Tom Ferguson. Tom was a participatory medicine pioneer. He had edited the health section of the Whole Earth Catalogs, and published a magazine called Medical Self Care. We started talking and hanging out in the early 90s – he found me via EFF-Austin. He could see the potential for the Internet to provide patients access to more and more information, and he had always advocated for patients to be as informed as possible, and to have a role in treatment… and do as much for themselves as possible.

He had a grant from the Robert Wood Johnson Foundation to do a white paper on e-patients (See e-patients.net), and he knew that blogs and social technology would be relevant. He wanted me to join his team of physicians and others because I was involved in the evolution of social technology, what some now call social media.

I started working with the e-patients working group and became a founding member of the Society of Participatory Medicine.

How long this movement had been afoot? I’ve read that things like this were going on as far back as the 80s in places like the WELL.

Yes, there’ve been a lot of patient conversations and communities over the years in various contexts. The WELL has always had an active health conference, and patient communities like ACOR have been around for a while.

Other than there being a lot more people involved now that the Internet has become mainstream, is there any big difference between what’s going on now and what was going on way back when?

In a way, yes. With higher adoption of the Internet, you have so many more patients getting active online. And the tools are evolving so that it’s easier to create contexts for conversation. Also, partly thru Tom’s work and the Society, and other orgs like PatientsLikeMe and the Health 2.0 conference, you have a lot more interest, activity, and potential for innovation. And there’s more information coming online, so patients can theoretically be better informed. There’s also new tools for people to manage their health records online, and track aspects of their health. More hospitals and healthcare professionals are starting to use social media to connect with patients and for community engagement.
We have a whole movement forming around patient demands for access to their complete health records.

Can you give any examples of “success stories” in participatory medicine – anything that really stands out? Like a situation where you could say “Wow, that recovery could never have happened otherwise.”

Dave deBronkart. He had 4th stage terminal cancer, is now in remission. If he hadn’t been an e-patient, he might never have found the treatment that made him so much better.

Here’s what the Wikipedia article about him says:

His kidney was removed laparoscopically and he was treated in a clinical trial of high-dose interleukin-2 (HDIL-2), ending 7/23/07, which was effective in reducing the cancer, although his femur ultimately broke from damage caused by the disease. Visible lesions on follow-up CT scans continued to shrink for a year and have been stable since, and are presumed dead.

He learned of the treatment through his e-patient activiites and research. No one had told him about it. If a healthcare provider can’t offer a treatment, they don’t necessarily know about it or tell you about it.

Dave deBronkart aka E-patient Dave/em>

Is there a downside? Increased “cyberchondria,” or decreased trust in physicians?

Jon L. Part of the power of participatory medicine is in patients collaboratively researching and discussing various treatments. More powerful than a single source of information. There’s a potential down side – a physician has a different context for assessing information, and may make different judgements. But it’s good for patients to be more informed. For the physician, there can be an issue of having to spend more time with patients explaining why something they’ve found online might be inaccurate or inapplicable.

Physicians who believe patients should be empowered can be pretty good about that, though.

And there are physicians who don’t assume they necessarily have the answers, and are very willing to listen to patients who’ve been researching, and consider what they have to say.

The patient has a strong vested interest in outcomes, and will sometimes dig more deeply and thoroughly than the healthcare professional has time to do.

Here’s another downside to consider: some patients may become more knowledgeable about their conditions than their doctors. There’s a tendency for people, and I’m as guilty of it as anyone, to sort of double-down on their position if their expertise is questioned- especially if that expertise is questioned by an amateur. A physician might not want to admit they were wrong about something and their patient, who might not have ever even been to college, was right.

Yes, that’s definitely a concern. The solution is to create a culture where patients can be seen as peers. (Though not all patients will want that… many will.)

Not to be too personal, but have you been an e-patient yourself?

Jon L. Yes, but not with anything life-threatening, at least no so far. I have psoriasis and have researched it online, and was on a psoriasis email list for a while. I left it. My general sense was that the list was dominated by people who had strong feelings about what would or wouldn’t work – e.g. would vehemently oppose other patients who felt there was a potential to see results through changes in nutrition. I had a feeling they were being defensive – didn’t want to change their eating habits. So not all communities will be functional, or will work for all members.

I also had a problem with arrhythmia that seems to have been treated effectively by cardioversion and a round of drugs. I researched the drugs and decided I felt they were too toxic to continue, so I stopped after a year and a half. The cardio would have preferred I continued at least another six months.

Do you have any recommendations for potential e-patients for finding resources and communities, or places to avoid?

I would counsel proceeding with caution until you’ve felt your way into it, and got a good sense of the online landscape for your condition. It’s so easy to be misled, to get the wrong info. There are some communities that are well-established, and are the best places to go for specific conditions – like ACOR for cancer.

Also in researching your condition, remember that you’re not a physician or health researcher, so you don’t have the same context for assessing the information you find. Don’t assume your physician is wrong if you find contradictory information online.

You can get a sense of the landscape by reading e-patients.net and Journal of Participatory Medicine (the latter is the journal that the Society for Participatory Medicine started). There are also a lot of bloggers and tweeters in the e-patient space. Here’s a blogger on patient advocacy: Every Patient’s Advocate

Ed Bennett has resources for healthcare professionals.

Is there anything of note in the recent health care overhaul regarding participatory medicine?

It’s more of an insurance overhaul than a healthcare overhaul. I don’t think it has a lot of impact on what we’re talking about.

One thing specifically mentioned on the Society for Participatory Medicine’s web site is a need to address the digital divide’s impact on participatory medicine. Do you know of anything being done, or do have any ideas for solutions?

I don’t think there’s a specific project to address digital divide in this context. In fact, the community network / digital divide efforts in general seem to lack steam. Part of that is because Internet adoption is so high, it seemed that the issue was resolving as we had more and more ways for people to get online, and more incentives for them to do so. However I know there’s a significant number of adults who don’t have the kind of access they should, especially considering that so infrastructure for services is moving online.

State and smaller governments, for instance, are moving services online for the efficiency.

It’s not just a matter of access either, there’s also a matter of online literacy.

And when we get to the point where all healthcare data for everyone is available digitally, not just as an electronic health record but as a personal health record, only those who have the right degree of digital literacy will be able to have that as a factor in managing their health. To me the digital divide is more about knowing how to use computers than actually owning the hardware, so I’m with you 100%.

Metaverse One’s augmented reality anatomy education app

Bruce Sterling, in the State of the World conversation you moderated, suggested the possibility that individuals, informed by various web based instructional materials, could start doing amateur medical operations. It was clear that what he was talking about wasn’t what you were talking about in terms of participatory medicine at the time, but have you thought anymore about that scenario?

I think it’s pretty unlikely – he was seeing that as the ad absurdum where participatory medicine could go, but I think that’s a real misunderstanding (and I don’t think he seriously believed it would go there). That’s really not what “participatory medicine” and “empowered patient” is about… when we talk about being better informed and being part of the conversation about your own health, it doesn’t follow that anyone would necessarily want to be an amateur surgeon.

Maybe not in the global North, but I can imagine it happening elsewhere, where access to professional health care is worse. Or even here in the States if economic conditions worsen.

You have a point there, but it’s not really what participatory medicine is about.

I could imagine someone learning how to do just one or two particular procedures really well and just doing doing those.

We are near a point where only the elite can afford adequate care. Yes, very possible.

Right, so the “participatory” in participatory medicine means more participating in the decisions, not doing surgeries.

Right… participating in the knowledge, and in the decisions.

Well, I think that about wraps it up. Do you have any closing thoughts?

My focus has always been on the Internet and its impact on culture, so participatory medicine is just one of a set of related interests. I’m still thinking about what’s really happening and how what’s happening in various sectors relate – participatory medicine to the changes in journalism and in politics, for instance.