Unplugging the system (HealthCamp Toronto)

It’s taken me more than a week to get around to synthesizing my impressions of the inaugural HealthCamp Toronto, which was held on September 15, 2009.

HealthCamp is a participatory, roaming unconference. An unconference is a self-organizing community event, a workshop whose content is entirely generated by the participants. Originating in the tech industry as BarCamps, events of this kind have been on a four-year victory march around the world, first in the web 2.0 milieu and now more broadly. In Toronto, we’ve seen DemoCamp (web 2.0 startups and VCs), TransitCamp (those passionate about Toronto’s public transit system), ChangeCamp (politics in the age of participation) and CaseCamp (social media marketing). And I’m sure there are lots of other events that follow the format.

Camp methodology is a simplified version of the Open Space Technology approach to running meetings. A group of interested people, from various backgrounds, meets for a day to tackle a big issue or complex problem. At the beginning of the day, the participants decide on a number of session topics. Anyone can present/lead a session. Topics are inserted into the “grid,” literally a roster of rooms and session times glued to a wall with masking tape. Meetings are completely voluntary, and attendees simply go to whichever session they are most interested in. If they don’t find themselves learning or participating, they exercise the “law of two feet” and go to another session. The session leader presents his or her case, and the group discusses it. Someone makes notes or records the proceedings on video. Many people use Twitter as a “backchannel” to capture their ideas and opinions while the meetings are in session (this is ostensibly for those who couldn’t attend the event, but also feels a little like the kids at the back of the class loudly whispering to each other). At the end of the day, everyone sits down together, and some attendees may propose practical further actions based on the discussions and new connections from the unconference.

HealthCamp, in spirit perhaps closest to ChangeCamp, asked about the meaning and impact of new participatory technologies in healthcare. As the first such event in Canada – and held on the eve of a regular style conference called Medicine 2.0 that would discuss very similar subject matter – it was interesting to see how many American participants showed up. HealthCamp has been quite successful in the US, a country taking an honest, hard look at change in healthcare perhaps for the first time in decades. And while certain issues are similar between Canada and the US (patient/provider communication, for example, or how to incorporate a patient’s own web research into the patient-physician conversation), others, of course, are not. The occasional mentions of “PHR” by American participants and the Canadians’ slightly confused and bewildered reactions were just one example of this.

I attended HealthCamp because I’ve provided IT consulting services to the healthcare industry in the past, and it’s an industry whose issues and challenges I’m interested in. I also went to support my partner who has blogged about her own reasons for going. And finally, I believe that healthcare is such an important topic for anyone living in Canada today (Ontario spends $20 billion annually on it), so I felt strongly that I wanted to experience this event and see how I could contribute.

As with any event, the number of sessions one person can attend is limited. I found myself attending a series of sessions that related to, or touched on, these broad topics (I’m synthesizing and paraphrasing what I heard):

• The communication between patients and physicians, or patients and other healthcare workers, is a key topic of interest. There’s an awareness that there is a lot of dysfunction in the quality and nature of communication with healthcare consumers.
• The availability of health information on the web is steadily increasing. There was a lot of discussion about the changing role of physicians as interpreters of information that patients have obtained from the web.
• The paucity of medical (academic) research that has authentic meaning for patients, or is useful to them: patients care about understanding outcomes, and outcomes-based research doesn’t get funded.
• There is a huge “credibility gap” and “credibility uncertainty” between what healthcare workers know based on fact – and what patients know from the Internet. It’s now often the case that patients know ‘more’ than healthcare workers. How does this change healthcare?
• Symptom-centric medical information on the web isn’t as useful as connections between patients (community). Unfortunately, patient communities are fragmented along symptoms or conditions, and therefore, meta-learnings or community best practices don’t readily emerge.
• Patients look to the medical system for advice and care coordination, but the system is frequently incapable of providing it. Whether this is a failure of the system or the patient’s failure to take ownership is unclear right now. We know what the system is implicitly expecting us to do, but we don’t know know yet whether the expectation is being met with any degree of success. There are very real concerns about an “access divide,” because self-coordinating one’s care requires a range of skills and experience that many healthcare consumers simply don’t have. There are also barely any vehicles to teach healthcare consumers these skills.
• There continues to be a deep disconnect between patients’ needs, front-line healthcare workers’ realities, and what the policymakers actually know, understand and prioritize. For me, this frequently came out when the conversations involved people from the Ministry of Health and Long-Term Care. Even the younger, more Twittered-in MOHLTC people grappled with questions that are surprisingly disconnected from the reality on the ground, such as “How will we know when Government and providers are really listening?” (I should have exercised the “law of two feet” in that one…).
• There are many interesting, new approaches to collecting and mining data: the event’s organizers, Health Strategy Innovation Cell, are analyzing social networking data to learn from conversations about healthcare (it sounds interesting, but the jury’s out on this one as far as I’m concerned; though I’d certainly like to learn more).
• Our modern, stringent privacy laws and regulations are beginning to get in the way of the natural evolution of putting healthcare narratives online; after all, these are the basis for interpersonal connection and, ultimately, patient community. There were many discussions about how physicians – if they cannot afford the time to be guides to their patients anymore – might act as connectors between patients and survivors, volunteer guides or mentors. But: healthcare privacy laws say they aren’t allowed to do that. Patients, on the other hand, will readily waive their privacy rights in exchange for better information or a personal connection. We will soon be at a public policy inflection point regarding this issue.

Inevitably, there were many other conversations at HealthCamp. I realized, during “circle time” at the end of the day, that I hadn’t shared a single session with at least 50% of the participants. Sessions and discussions I missed would have included:

• Data rights
• Technology: web 2.0 and web 3.0 (semantic web) related sessions (I felt that that wasn’t the reason I was there)
• Learning from mistakes: using social networking technology for more typical knowledge management pursuits such as evolving the healthcare system
• Increasing patient awareness of preventative practices

And there were certain key people, such as e-Patient Dave and Jen McCabe, who I didn’t meet or hear speak other than during the wrap-up at the end of the unconference. Which is a shame, because they seemed like genuinely interesting people. This, incidentally, illustrates one of the shortcomings of unconferences for me: the lack of editorial guidance, the self-organizing nature of it all, means that it’s quite possible that you end up missing some genuinely great sessions and fascinating people.

All in all, I learned a lot that day. HealthCamp helped me – a relative outsider – gain an understanding of the promise of this new web of ours for healthcare, and what challenges it might help address. At the same time, it became abundantly clear to me that “health 2.0” defined in this way is just a spit in the ocean. We can try to learn as much as we can from online patient conversations. And inevitably, patients will increasingly incorporate web research and community support into their self-managed care.

But clearly, the real issue is the impending tsunami of boomer retirement and its impact on public healthcare, a system we won’t be able to staff – or afford, for that matter. The impact on providing healthcare services in Ontario (all over the world, really) will be staggering.

Maybe we can talk about that at the next HealthCamp?