As we work to re-engineer both the culture and the structure of healthcare, one question that constantly faces e-patients with uncommon or difficult conditions is:
Where do I turn, to find genuine value?
The traditional answer is “ask your doctor,” and clearly that often works. But what about when it doesn’t – or when you can’t afford a visit, as is increasingly true in America? Do we expect the expensive, overburdened healthcare system to be the sole source of useful information?
“Doc Tom” Ferguson noted in 1978 that most of healthcare is self-care. And Pew Internet’s landmark 2011 report Peer-to-Peer Healthcare documented the extent of families finding value today among peers.
In July we wrote “How Facebook Saved My Son’s Life,” about a Slate.com item, where a mom’s Facebook postings unexpectedly led to discovering Kawasaki disease in her son over a weekend. It’s a time-sensitive condition, and getting to the emergency room was in fact important.
Now this, on Huffington Post Sunday: Facebook Helps Match Kidney Donors & Recipients
Damon Brown found a kidney on Facebook after telling his story on a special page the Seattle dad created under the name, “Damon Kidney.” His friends and family forwarded the link to everyone they knew and on Jan. 3 a woman his wife has known for years, but not someone they consider a close family friend, will be giving him a kidney.
Brown’s story is not unique, said April Paschke, a spokeswoman for the United Network for Organ Sharing, a private nonprofit organization that manages the nation’s organ transplant system for the federal government.
“We see more and more people matched up by social media,” she said. “It’s an extension of the way we communicate. Before we found the Internet, people found other ways: through a church bulletin, word of mouth or an advertisement even.”
This past year, a man in Michigan also found a kidney donor through Facebook, and a Florida woman found one through Craigslist.
On the conference circuit I’ve seen that forward-thinking physicians increasingly explore social media for new ideas too, recognizing that “information capillaries” are no longer limited to medical societies, their journals, and professional networks.
As it said at the end of that July post about Kawasaki, “Health is social. And social networks let us bring real value to care episodes, they let us be engaged in our families’ care, beyond what our clinicians provide.”
That’s beyond - in addition to – not instead of. Participatory medicine is a partnership, and HCSM (healthcare social media) is a channel of value, genuinely augmenting the other sources of value, not discarding them.
As the Kawasaki patient’s family physician said, “Bravo, Facebook.”