To me, there are two types of breaking news in health care: the macro and the micro.
Macro health news breaks when there is a natural disaster, a scientific breakthrough, or a new twist in a policy debate (see: “ACOs“). I read up on the facts and try to make sense of the latest turn of events, but usually from a comfortable distance.
Micro health news breaks when a loved one gets a serious diagnosis. Then I follow the unfolding health care story with intensity and I care more about the outcome.
Nancy Shute of NPR pulled off a nice trick this morning when she reported on how one online community swarmed to the rescue of a woman who was recently diagnosed with a rare condition. The story grabbed my attention with micro intensity but was able to make a macro point: “Web Communities Help Patients With Rare Diseases.” By the end of it, it mattered to me that one woman’s kidney was saved thanks to a Facebook group. I bet it mattered to a lot of listeners, not just because it was a good story, but because it resonates with their own experiences. Pew Internet’s research shows that 1 in 4 internet users living with chronic disease go online to find other people with similar health concerns. The report Peer-to-peer Healthcare also chronicled how those connections can make all the difference in the world, especially among people living with rare disease.
Susannah Fox says
I added an abridged version of this post as a comment on the NPR site b/c the only current comment seems to imply that lipstick is the reason why LAM affects only young women (and may also be the cause for cellulite).
I also wanted to note FB’s role in the story. I recently tried to knock down a growing “truth” that FB is a significant source of health info (Pew Internet surveys show it plays a small role for most people – see this KevinMD post for more info: http://www.kevinmd.com/blog/2011/04/patients-facebook-health-information.html ). However, FB can be a huge part of an individual’s health network – Regina Holliday has called it an EMR with privacy issues and other people have praised its ability to easily create interest groups.
I’d love to hear other people’s experiences with FB, MySpace, LinkedIn, etc. and health.
My sister has a rare kidney disease called cystinuria, which results in frequent production of an unusual kind of crystalline kidney stone that can inflict damage on the kidney and urinary tract and cannot be treated using most normal non-invasive procedures.
While thankfully, her manifestation of it is atypically mild, in most people it is a debilitating disease that can intrude into daily life. Worse, many nephrologists and urologists are unfamiliar with the disease and can make things worse with uninformed attempts to treat the condition. She and many other sufferers have found a great deal of support and advice through forums like Cystinuria.org.
On a related note, I’ve also discovered that it’s not uncommon for online communities to come to the aid of their constituents in more tangible ways. I’ve seen a number of people faced with medical bills and no insurance receive financial assistance from members of their online networks (occasionally even enough to pay their bills off completely), or legal advice or even representation. This isn’t limited to medical networks. In one gaming forum I belonged to, our membership contributed enough funds to pay for one of our members (a freelance artist with a degenerative corneal disease) to get a corneal transplant when he found that thanks to a filip of the Swedish health system and the categorization of the disease, it was considered an “elective procedure.”
So, peer-to-peer indeed!
Susannah Fox says
Julia, thanks so much for that story! And best wishes for your sister’s continued good health.
David Goldsmith says
No doubt there are a lot of active health communities on Facebook, but one issue we see as a very real limitation is its authentic identity model.
For some health conditions this may not be a big issue, but for people with chronic disease revealing their true identity is real cause for concern. In some cases people who could benefit won’t accept the privacy risks. In others, they do participate, perhaps unaware of the risks involved when sharing sensitive information about their health in such a public forum.
One disease association I’ve talked to has mentioned instances when its constituents have posted the results of their genetic tests on their FB page. It’s a reflection of just how hungry some people are for support from their peers. But for health communities in particular it also underscores the importance of offering an alias-based identity option, something Facebook won’t offer anytime soon, if ever.
Susannah Fox says
David, you are writing what I’m thinking, once again – thanks!
The report that comes to mind isn’t health-related, but rather identity-related:
Pew Internet: Reputation Management and Social Media
The survey found that younger internet users (ages 18-29) are more likely than older users to limit the amount of personal information available about them online, change privacy settings on social network sites, and just generally less trusting of online social network sites. Why, you might ask? Maybe they understand better what’s at stake. Something to think about as we look at older adults increasing their use of social tools.
Joe McCarthy says
I finished up a post on consequential strangers and acquaintances, online and offline with a link to an eBook called Twittertales, a collection of 11 short stories compiled by Valeria Maltoni (@ConversationAge) about how Twitter has helped establish valuable connections among people in the real world.
I mention it here for two reasons. One is that although several stories are about networking for business or fun, Tale #8 describes an episode of Twitter-initiated connections in the context of the Frozen Pea Fund for raising money for cancer research. The other reason is that I think it would be great to compile an eBook collection of tales about online connections that translate into offline connections with substantive health-related impacts. Perhaps this post will offer a forum for starting such an endeavor.
Susannah Fox says
Thanks for linking to your post! I am writing up Pew Internet’s latest data on the use of FB/MySpace for health (62% of US internet users have a profile on such sites, only 15% use it to gather health info, a more common use is to follow friends’ health travails & triumphs). Now I can place our findings in context – you’re the best!
Joe McCarthy says
Susannah: I’m looking forward to reading the report you are working on.
In response to your question back on my blog post, I added a number of social health-related excerpts from Consequential Strangers (they have a whole chapter on the health impact of consequential stranger, “Good for What Ails Us”).
I think you – and anyone else interested in the health impact of social networks – would find the chapter (and probably the whole book) a worthwhile read.