I was so fortunate to have been given the opportunity to attend the Connected Health Symposium in Boston on October 25th and 26th courtesy of a free pass from the WEGO Health Press Corps, and I would like to begin this post by telling you how grateful I was to be there. I watched Stanford Medicine X live virtually from my bed late September, and wanted nothing more than to be in that conference hall, experiencing the positive energy from the collaboration and discussion between patients, health care providers, and health start ups, so I jumped at the chance to attend this symposium barely 25 minutes away from my dorm. The tag line of the symposium was, “Where Innovators in Health Care, Technology, and Communications Connect”, and I was thrilled to be able to be a small part of the “Communications” contingent present at the conference as a “blogger”, as I began to have to introduce myself.
I didn’t begin my day Thursday introducing myself as a blogger; after all, 13 posts on a WordPress site does not a blogger make, and I felt I better belonged to the unspoken Patient category, so that’s what I called myself. I told a JD/MBA student and a fellow undergrad that I was there to blog about the conference and live tweet it to my fellow ePatients, and their faces fell. I could tell that they weren’t interested in that part of my story, so I quickly moved on to the WEGO Health aspect. The graduate student eventually did ask about my ePatient status, and I had the opportunity to explain what I had learned from MedX tweets and live coverage: an ePatient is “a patient who uses the Internet to gain information about their disease, and uses technology tools to aid in coping with their disease” (definition lengthened from an extremely helpful tweet from @HurtBlogger). I have to admit that I wasn’t expecting their stunned reaction – I thought the idea of the ePatient was well-known in the ehealth care world, but when I continued to get blank stares from the next five people to whom I explained the term, I started to understand what I was up against. No one inquired about what made me an ePatient (i.e., what kind of patient I was), which was surprising after having announced that what I do is talk about my illness online, in public!
It wasn’t even 8AM by the time I figured out that I wasn’t surrounded by likeminded ePatients and health activists, and as I settled into my seat at a table for the opening remarks, I started to reflect on my role as a patient-turned-blogger, and decided to proceed as both: I decided to tweet not just as a health activist but also as a person who has a stake in these conversations about the future of health care (I have discovered that the “blogger” and “patient” facets of me are inextricable: they each make the other better, for after all, what would I have to blog about if not being a patient?!).
The first keynote address given by Juan Enriquez centered around the “Missing Measure” of health care: we need to measure the cost of imposing unnecessary regulations on drug advancements in terms of the number of lives that could have been saved while the FDA stalled new research. One of the more compelling examples he gave was about vaccinations. He remarked that producing effective vaccinations was not particularly attractive from a big pharma standpoint (if you immunize against diseases then people will stop needing care for that particular disease), but doing so made perfect sense from a societal standpoint. This opening address touched on one of the main themes of the day: Big Pharma versus society.
The second keynote from Dr. Sherry Turkle hit close to home when she discussed the “I share, therefore I am” sentiment of many social media devotees these days. The phrase refers to those who cannot feel an emotion before sharing it; it’s as if the act of sharing one’s feelings via twitter or Facebook legitimates them in one’s mind and body. We’re being shaped by the technology we’ve created, she remarked, adding that we’re hiding from each other even as we are constantly connected to each other: “Everyone’s in their own bubble, furiously connected to keywords and technology.”
I would like to add a positive spin to her mostly naysayer’s view of the capacity of technology to bring people together: instead of separating people who would otherwise interact face-to-face, technology (be it twitter, Facebook, Skype, or even gchat) unites people who would otherwise be unable to interact face-to-face, especially in the online patient community. Online interactions help relieve the pain of loneliness some chronically ill patients endure because they are too ill to leave their beds by connecting them to the world outside their own minds, and allowing them to share their problems and feelings with people other than their caregiver(s). This facet of the online community was not addressed in Dr. Turkle’s keynote, and it was also skipped over during first breakout session I attended.
I headed over to this first breakout session entitled, “Resolved: Online Patient Communities are an Effective Way to Deliver Care. A Symposium Debate” between Andrew Watson, MD (for), and Jeffrey Benabio, MD (against) and moderated by Alexandra Drane. I expected a rousing debate about the dangers of patient-led online communities, but in the end Dr. Benabio admitted that Dr. Watson’s position was the one he sided with most (it was actually fairly clear throughout the entire debate that Dr. Benabio wasn’t wholeheartedly against online patient communities).
One of my favorite parts of the debate was when Dr. Watson said that face-to-face clinics are not working, and that clinicians have a strong moral obligation to evolve with the understanding that online care does not equal scattered, inappropriate care. The argument boiled down to the potential for the spread of rumors, misdiagnoses, and inappropriate treatments among patients with similar conditions, and both sides agreed that there may be an opportunity for clinicians to get involved to help guide patient-led communities to correct information. To that end, I would point them to Health Tap, which was featured at MedX and consists of a purely online community of registered, vetted clinicians who can answer questions posed in the (free) fora with the added possibility of online patient-clinician meetings via Skype or another video conferencing platform for a fee.
But what I would caution against is the generalization of the patients who interact via patient-led online communities. Sure, there are plenty communities out there that involve pointing peers to new treatments and even new diagnoses, but the patients who seek those answers (in my experience) are savvy enough to understand that the final opinion is going to be their primary care doctor’s or their specialist’s. I would argue that the primary reason patients turn to online patient-led communities is for support, not new information, and that fact was discounted during this debate. Dr. Benabio used it in passing, saying something to the effect of, Sure, patients get valuable support online, but when it comes to the spread of misinformation, that support becomes harmful. (not a direct quote, just a paraphrase of a general argument he made)
There is a reason patients turn to the web to seek support and empathy and purposefully do not involve clinicians–we see enough clinicians in our day-to-day lives to make a clinician-free support community a necessity. And then there are places like twitter, where patients and clinicians have the opportunity to interact on a more even playing field through the use of tweet chats and conference tweeting, and that kind of interaction is invaluable–it fosters respect for both sides of the equation and is something I have come to rely on for discussion and yes, information.
Dr. Benabio’s argument focused on the fact that there haven’t been any outcome-based studies on the benefits of online communities, and that in order to judge them like we judge other medical advancements then they should adhere to the tried-and-true test of an outcome-based study, but I believe that the results of any study can’t possibly address the kind of emotional and psychological benefit of interacting with people who are experiencing the same (or similar) life problems and challenges that you are. I even tweeted, “Wondering if the benefits of direct patient interaction will surface during this debate. #cHealth12” at one point, but they never did touch upon that point. Alicia Staley, a woman I admire greatly for her patient advocacy and insight into health care problems (@stales on twitter), stood up to discuss this point a bit more, and talked about how social media saved her life, but the moderator was being pushy and the debaters didn’t have a chance to respond fully. At that point, it was becoming clear that Dr. Benabio was pro-online patient communities, despite his prepared opposition, so they mostly wrapped up the debate and the two doctors agreed with each other.
Two of the events that followed stood in stark opposition to each other, and I would like to take the space of a separate post to discuss my reaction to both of them. Susannah Fox of Pew Internet Research gave her keynote address entitled, “The ‘e’ is for Engagement: the Latest Research on the e-Patient Revolution”, and then I attended a breakout session with a panel entitled, “You’re Talking to Me? Ensuring Patient Comprehension and Motivation.” While these two events did not directly follow each other on the agenda, I would like to raise them in contrast to each other in terms of their use patient-centered language and respect for patients, and discuss how the overall effect colored my view of the conference and of the rest of the presenters, and why I think we need more of one and less of the other.