I am seeing a theme emerge in our discussions about healthcare. I hear it in my office; during the Medicine X 2013 conference; in a comment on my last post about my experiences at Medicine X; in the #patientchat TweetChat this week; in tweets that I have seen for the cHealth 2013 conference and the British Columbia Kidney Days. The theme is this–that empowered patients often feel as though they are engaged in a struggle with their medical providers to be taken seriously, to be treated as a member of the team, to be heard. And I have had my own patient experiences that have shown me that this isn’t just a patient feeling–it is an actual experience.Patients have spent too much time watching conferences and summits in which the patient experience is represented by someone without a primary patient identity.
I agree with the frustrations that I have heard expressed. I have lived them. I believe passionately that patient voices should be at the core of professional and academic conferences. If we aren’t talking to our patients (or, in tech-terms, the end user), we are talking in an echo chamber. We need to be reminded of why we chose these helping professions. We need to hear where our hopes for good care are falling short of patients’ needs. We need to hear about the small things that work.
I have to admit, though, I am a little concerned about the divisiveness that I have heard arise. So many of my face-to-face clients have had difficult experiences as patients. They have complex chronic conditions that don’t submit easily to a diagnostic label. They have had to struggle to be heard. I want that struggle recognized. But the relationship-builder in me doesn’t want the struggle to be recognized by casting patients and physicians as opponents. I want to see relationships like the one between Michael Seres and Marion O’Connor (check out the great video below) recognized as normal, instead of extraordinary.
I want the many passionate, caring, engaged physicians to be connected with the many passionate, caring empowered patients in a proactive, cooperative way. I want to think and talk about how we can connect, and build bridges, and encourage one another when we hit obstacles. I think conferences like Medicine X, communities like the #BCSM Community, spaces like Talk About Health or WEGO Health, and chats like #patientchat are a wonderful start to that bridge.
I want to be part of the bridge. How about you? What else can we do? Where are the points of connection?