One of our Society’s best kept secrets is the composition of our membership. And lately, some of my best collaborations are coming out of conversations with fellow members. Last week, as I frenetically packed for a trip, I was chatting on the phone with our own e-Patient Dave. We were talking about the Movement, some of its key players and the nature of problems.
Specifically, we were discussing some pioneering work to help end hunger in the 1970s. According to Dave, one leader of that movement —I trust he’ll pipe up in the comments and fill in some of these details —described problems as having three phases: deceptively simple, overwhelmingly complex, and then, profoundly simple. That construct struck me as feeling incredibly familiar, even though I was hearing it for the first time.
When I talk to people who aren’t as familiar with the movement —patient muggles? —I often describe ePatients as existing on a continuum. Many become ePatients out of necessity; they seek information on a new diagnosis. Those who continue along the continuum feel value in connecting with others and then as serving as guides for those just beginning their journey.
Along the way, virtually every ePatient, participatory provider, and advocate finds some sticky wicket, some problem which seems remarkably simple. My doctor is always late and makes me wait! If they were [insert any number of ideas here: more considerate, on time, technically literate…] then this wouldn’t happen. I don’t have to wait to see my dog’s vet! Sound familiar? Or sometimes its more like: giving me access to my records is a right. I deserve the same real-time access to information about me that my doctor sees. All the hospital has to do is flip a switch. I’m picking some pretty simple examples, but bear with me.
In these examples, both the problems and the solutions seem pretty simple, right? Doctor is late…text me before I leave the house so I don’t have to wait in the waiting room…problem solved. And, to make no bones about it, that’s a pretty clever solution to a nagging problem. So what happens next? ePatients, advocates, our fellow Society members speak up, addressing their own challenges and proposing simple solutions. The problems are real, and the solutions are smart, so they get invited into the tent. We speak at conferences, we write blogs, we tweet.
And once we’re in the belly of the beast, we see it all. Holy cow this is complex! What do you mean the doctor doesn’t work for the hospital? Why does the lawyer say they can’t text us? And what’s the deal with this EMR being so technologically opaque? And so we sigh. We throw up our hands. We call the entire system a broken mess. Perhaps you’ve heard colleagues, including yours truly, say something like: “we should blow the whole system up and start over.” Or sometimes it’s: “the real disruption is going to come from outside the system.” Again, like our problems above, the sense of overwhelming frustration and the hands-in-the-air-hopelessness are completely rational. Maybe, too, the ideas of starting fresh or looking outside the industry are valid.
Then something happens. As ePatients, advocates, and participatory providers continue on their journey, a zen-like simplicity emerges. They see problems differently. And because they are seeing them differently, the solutions are also different. They are simple. Only this time, they are profoundly simple. My doctor runs late, so I now take care of myself and don’t go to the doctor. Consider the #WeAreNotWaiting community, the group using existing technology to build an open source artificial pancreas system. In a recent talk, one of the community’s leaders, Dana Lewis, was asked if she told her doctor about her artificial pancreas. Dana’s answer: “why would I?” Pretty simple solution, become your own doctor. And with a virtually flat line blood glucose graph, who would argue her approach?
These two intersecting models —the nature of problems and the ePatient journey —tie together perfectly. Further they are the recipe for innovation in healthcare. Being able to clearly see a problem and reframe it is a hallmark of the the design process and that’s exactly what happens when ePatients go from deceptively simple to overwhelmingly complex to profoundly simple. ePatients who unravel problems and find profoundly simple solutions are both aided by and then advanced along their own journey. By being able to see problems and propose solutions they are invited into the discussion. Once inside, the overwhelming complexity fuels a burning need to simplify and solve problems differently. What results are more elegant, simple solutions, the creation of which moves the ePatient further along their journey. And that’s a pretty neat thing.