Social Health And Patient Empowerment: Are We In A Bubble?
I regularly talk to my patients’ parents about social health. What parents do, what they think, and how they socially experience their child’s health problems has become an interest of mine.
I can hear it now: “Of course patients won’t discuss their social health activities with you, you’re a doctor.” Perhaps, but I don’t think so. Actually, I’ve had some very interesting open dialog with a few of my long-term patient-parents. Many have children suffering with chronic diseases such as Crohn’s disease, eosinophilic enteropathy, and the like. The relationships I cultivate are open, and the nature of my dialog has been just as consistently open as other aspects of our relationship.
Interestingly, while nearly all have used online search to understand their disease, most have never connected with other disease sufferers in the online space. The concept of crowdsourcing is met with puzzled looks. Sure they’re e-patients, but I would characterize most of my patients as e-patients. The question is: What does that really mean?
The definition is admittedly broad. For example, how is an e-patient who simply seeks information online discriminated from the e-patient who seeks the independent capacity to prescribe medications or genuine dependence on the hive to make difficult personal health decisions? To that end, has Health 2.0 really seen adoption of this once you leave the narrow online reverbosphere of opinion?
As far as social health among the parents of children with digestive diseases in The Woodlands, Texas, I might suggest that true engagement is a rarity.
To some extent, I wonder if a lot of the dialog about social health and the mass exodus towards individual empowerment is overstated. Not that it isn’t important or won’t evolve to become more important, I just wonder if those of us who think about this are living in a bubble.
*This blog post was originally published at 33 Charts*
We are definitely in an Echo Chamber.
Now, that’s not necessarily a bad thing, but the problem is this: once a need is defined by a small group of people, the words selected may influence how that need is met – or not met.
The emergence of the “e-patient” as its own concept may have met the need to shed light on how patients can best express their voices, use technolgies, connect with others and work with providers.
But people do these things one their own, regardless of words like ePatient. There is no silver bullet for how social media works in healthcare.
Perhaps we talk too much about all this. I’m sure there was a time when the industry talked about the telephone (or maybe even the telegraph). Perhaps that’s what we’re talking about now: tools which simply will become staples of communcation and collaboration, adopted by patients on their own time and in their own individual ways.