I had a thought recently, while speaking at a pediatric conference here in Toronto. I looked around at the attendees–chatting, sharing notes, comparing stories and anecdotes, listening to presenters delivering the latest research and case studies. Why, I thought, do parents and patients not do this? Or rather, why do we do this only online? Where are our conferences?
I reflected on what opportunities I had ever been given by an institution to connect with families where I would be invited to openly share and compare details of our circumstances, diagnoses, conditions, home life–with the goal of soliciting opinions, ideas, creative solutions from other patients or parents. The answer? Never. Instead, I was aware of various support groups for emotional sharing, or groups formed by administrators/social workers/family resource staff to deliver how-to information sessions (or, as I experienced once, to deliver propaganda on a particular surgery. I’m looking at you, cochlear implant.)
Truth is, institutions discourage this (sharing amongst families). I attended a symposium last month – it was about how hospitals should respond to contentious cases that go viral through social media. The discussion was a good start but a bit depressing. Social media is so clearly misunderstood by those who don’t participate. And there seemed to be a conflation of the term ‘media’ and ‘social media’, as though there was some kind of agency called “The Press” who was managing all those tweets (?!).
Anyway, the most surprising statement of the afternoon was this, spoken by a well-intentioned but flustered administrator: “We as institutions need to look at what we are doing wrong if families are turning to each other online and sharing their stories. Obviously it means we are not doing our jobs right.” Laughable, yes? I almost fell out of my chair. In this statement, the desire to own and control all aspects of a patient’s medical experience came through loud and clear.
Let me run with this idea a minute. Imagine this:
Parents gather once a month in the Sick Kids Hollywood theater, or in Holland Bloorview’s auditorium. Maybe cap it at 100. Whoever wants to present their case to the group for feedback puts their ‘problem’ up on a whiteboard. Then, the group votes on which ones get airtime. You get 15 minutes (or whatever) to present your problems – kid not sleeping, can’t decide whether or not to get a g-tube, surgery is recommended but you’re not sure, medications aren’t working etc etc. With light moderation, the audience responds – with ideas, things to consider, sharing their own anecdotes, recommended ways to deal with the child, suggestions for how to negotiate with the doctor… Maybe a physician or two is in attendance, as a resource.
(I can hear the whole patient privacy argument rearing its head – I will say just two things: I don’t have it all figured out, AND I think it’s the institutions most worried about patient privacy, not parents who are willingly sharing information.)
What do you think? An idea worth exploring?