“Health is social,” says SPM member Phil Baumann, RN (@PhilBaumann) at HealthIsSocial.com.
Slate has a dramatic story of how a mother’s Facebook network helped spot – rapidly – Kawasaki Disease, a rare auto-immune disease that the family’s doctors had initially missed.
Her social network contains some medically knowledgeable people. (Do you have any docs, nurses, etc in your Facebook circle?) Note that friends’ availability is sometimes far greater than a doctor’s office.
Read how the diagnosis unfolded. And read what her family physician said, when she called from the E.R.:
“You know what?” he said, “I was actually just thinking it could be Kawasaki disease. Makes total sense. Bravo, Facebook.”
Then this, as the crisis wound down: (bullets added)
“Facebook transformed from my son’s inadvertent lifesaver to the most valuable tool in my arsenal:
- to keep family and friends abreast of his ever-mutating condition without having to steal time and emotional energy away from him;
- to pepper [her FB friends] Beth, the pediatrician, and Emily, the pediatric cardiologist, with an endless series of random questions with which I was too embarrassed to bother my own doctors;
- to feel connected—profoundly connected—to the human race while living, breathing, eating and sleeping in the isolating, fluorescent-lit bubble of a children’s hospital ward, where any potential humans I might have “friended” on our floor were too distraught over the fates of their own children to make any room in their hearts for strangers.”
Health is social. And social networks let us bring real value to care episodes, let us be engaged in our families’ care, beyond what our clinicians provide.
Thanks to my college classmate Bill Reenstra for forwarding this item from our fellow alumnus David Grosof, who was at a talk I gave at our alumni club Tuesday in San Francisco.
Did Facebook or a pediatric cardiologist save his life? Are we creating a new expectation that our first step in an illness is to post it someplace? Or is it really a great headline to drive traffic? A gentle thought stream.
As great as this story is about what appears to be the power of how online social connections can “Save a Child’s Life” I worry a little bit about how many people just see the title and make false assumptions about the story. Is it the healthcare version of the “Secret” – if only it was true that having a big enough circle of online friends could solve our most pressing healthcare problems. (hmm it might)
As I tweeted yesterday and you captured above, her circle of friends included a close relative who was a pediatric cardiologist and a mom with a child with the same illness.. It also included a doctor who was treating the child.
Perhaps it is the result of our Western over-reliance on the power of the individual but lately it seems like we are re-framing people’s stories (including yours) to imply that it was the patient or the mom who was able to figure out their own diagnosis or treatment using the internet. I might have it wrong but even in your case I think you were sent to the support group by Dr Sands and he and your oncology team were actually recommending the very treatment that people on ACOR suggested? (vs finding it yourself , telling your doc about it and changing treatments?) but it was a powerful moment to “know” before your doctor told you about it?
They are both powerful stories and need to be shared but I wonder if it raises false hope and expectations that most patient’s on their own can diagnosis themselves faster and better then their providers and are even now expected to come up with the treatment on their own? Are we really advocating that the first step in any illness would be to post it online?
FYI- those who know me know I am a long standing patient centered design advocate and my “role” is often to question “models and myths” and find real world solutions and in now way am I questioning the power of social networks to help diagnose, find treatments or give us support during an illness (or when healthy) just what we can learn from the rare situations like these that will apply to the vast majority of people with a chronic illness.