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*