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.”
I re-read this wonderful historical document last week:
“Learning from e-patients at Massachusetts General Hospital” (2004)
It chronicles the creation of Brain Talk, a pioneering patient community for neurology. An excerpt:
“In 1994, as a part of an initiative by the department of neurology of the Massachusetts General Hospital to develop promising new ways of using information technology, we began to study how patients with neurological concerns were using online health resources. To our surprise, we found that thousands of patients and their care givers had already created an impressive variety of online health resources.”
“Most medical professionals who have set out to develop online resources for patients have created applications and content in a “top down” manner, directed by health professionals. Within such systems, end users (patients, their care givers, and their family members) usually have little or no input or control. Since the communities we had observed seemed to be doing quite well on their own, we chose a different approach.
Rather than taking on the traditional “provider as authority” role, we decided that we would think of ourselves as architects and building contractors, creating an online system in response to our end users’ requests. Our ultimate goal was neither to direct nor to monitor our e-patients’ activities. Instead, we set out to give them exactly what they asked for. Thus, rather than specifying the topic areas and designing the underlying information technology structure ourselves, we asked our e-patients what they wanted and designed the system by following their suggestions.”
My questions for you (and anyone reading this blog):
Now that FB makes it so easy to find & connect with people, what is the future for initiatives like Brain Talk?
Is FB the AOL of patient communities — ie, making it so easy to join & find the basics that people are satisfied with the training-wheels version instead of the more robust tools they might find on the open internet?
Susannah, you SO disrupt my day with these meaty comment-questions. :) You bring robust to a flighty stream.
1. > “…patients and their care givers had already created
> an impressive variety of online health resources.”
Yes. Why? Because by its very nature, user-generated content is what people want to talk about. In my TEDx talk I tweet-squeezed this down to “Patients know what patients want to know.” It disintermediates and de-paternalizes “Let’s figure out how to present what people probably want.”
Consider an info platform created by Sigmund Freud in an earnest attempt to answer “What do women want,” compared to what women themselves would/do talk about in the absence of Freud.
2. > Within such [top-down, well-meaning paternalistic] systems,
> end users (patients, their care givers, and their family members)
> usually have little or no input or control.
3. > we would think of ourselves as architects and building contractors,
> creating an online system in response to our end users’ requests.
Yes, yes, yes. In modern R&D terms this is what Agile is about: you start with a general plan, run for a while, then see what seems like the most useful thing to do next. Totally avoids investing in wrong-headed unwanted stuff.
4. > what is the future for initiatives like Brain Talk?
Depends what “like” means. If you mean the tech platform itself, yawn. If you mean the idea of helping people connect, then yes, anything that’s a go-to place (for seeking info, people, & resources) will outrace Brain Talk, and so will next year’s successor.
But then IMO there’s what you find there – the quality, richness, depth of the community and resources and empathy there. On those parameters, what I found in the ACOR kidney cancer community (pure low-tech listserv) is far beyond any other community I’ve seen. In my speeches I say “ACOR proves that when it comes to communities, it ain’t the platform, it’s the people.”
Let’s take “initiatives like Brain Talk” to the most important level: the design of care itself. Imagine every single aspect of health care delivery being approached in the same way. To paraphrase:
If we prioritize our healthcare initiatives that way (not by competitive market forces), do we get more proton beam capacity being bought, installed, and sold? Do we get more treatments being delivered & paid for at ever-increasing costs? Maybe, but I think not, because I don’t hear people at stores and Starbucks saying “Damn, we need a proton beam machine,” I hear them saying they can’t get care.
So I say: the future of initiatives that give patients & families what they want is strong; access to open communities is empowering; it ain’t the platform, it’s the people; and listening to what people want is truly powerful and focusing. (And tech can make listening easy, unless you’re instead shouting into the tube.)
In short, power to the people is a good thing, and tech can help.
I am always happy to spark a new insight or 3 out of you, Dave!
After I posted my comment I wondered if my shorthand “AOL” reference would make sense to everyone who reads it. I am surprised sometimes to find that what I take for granted is not understood by people who are not from the U.S. or of my general vintage.
AOL symbolizes, to me, the training-wheels version of the internet. It’s what I recommended for my grandmother when she decided to go online around 1995. It was a safe place to start — and some people just stayed there, happy & satisfied. Others quickly outgrew it and went out into the open internet.
As I quickly summarized on Twitter to a colleague: “Is this all there is?” to some is “This is all I need” to others.
If FB becomes a place where people with certain health conditions can find each other, will they feel the need to venture out to other patient communities, like those hosted by Inspire.com, for example, or CaringBridge?
Or will FB show people the possibilities and give them a taste of what is possible, but not available on that platform? If so, a more robust patient network like PatientsLikeMe could benefit from that trend.
I completely agree with your view of AOL. It was bad enough that they STILL call an email “a letter”; beyond that it drove me nuts that it stripped out all traces of intellect that a CompuServe Forum offered.
AND YET: no student of change can overlook that the dumbed-down (yes dumb) version is what grew like wildfire. Big lessons for distribution (planting) of healthcare info. (I think your “this is all I *need*” is on target. Or perhaps even “this is all I want to be bothered with. Go away.”)
> If FB becomes a place where people with certain health conditions
> can find each other, will they feel the need to venture out
> to other patient communities
Depends IMO on what they’re looking for. Just want someone else who knows about the nasty “hand-foot syndrome” side effect? To commiserate? If that’s “value” to one patient, any match suffices. Want solutions for it? Then naive / simplistic communities may fail – and then some percent of patients stop looking, and others continue.
You’ve noted (in Peer to Peer) that most searches are on behalf of someone else. Those would be the people to reach, if you want to say “Git yer more-‘n’-deeper red-hot info, right here.”
I assert that a lot of the change will unfold as awareness grows: lack of activity in a domain signifies nothing if potential users don’t know it exists.
p.s. CaringBridge isn’t a community, it’s a platform for an individual patient to communicate with their personal network, e.g. family and friends. Mine is here.
They always taught us – “where government steps in, private industry steps out”
Perhaps this is the new healthcare — “where healthcare steps out, patients step in”
Great discussion. Apologies in advance for the long post below but some thoughts from my end:
* First, believe healthcare communities is a pretty broad term and see at least two main categories (probably a lot more): communities around healthcare conditions and communities around wellness. Granted the differentiation between these two categories may be blurring, but that’s what I’m using for simplicity in the below:
* Do believe FB can be a connector or facilitator of discussions around health conditions. However, since it’s an open community where most people share their real identity, it limits the openness of discussions. FB may be the entry point, but believe people will migrate over to other more focused and more anonymous-friendly healthcare communities such as Inspire, dailystrength and imedix.com for support/info around health conditions. It may well be different for Wellness communities such as LiveStrong, dailyburn or healthrageous where the need to be anonymous may not be as high. Thus, several of these sites allow for Facebook Connect or similar social media integration.
* However, the real opportunity for facilitating healthcare communities (especially communities around health conditions), I believe are from either large delivery systems (integrated or not) like Kaiser, Mayo, etc. or health plans. Historically, neither of these healthcare stakeholders have proven very consumer savvy, but hopefully that’s about to change. With healthcare reform, delivery systems will need to stay a lot closer to their patients and build affinity, trust and loyalty w/patients to impact outcomes. Communities could be an effective way of achieving that, if done well. FB could be the lead generator along w/targeted communication & awareness campaigns for the patients…
And yes, I do believe health plans could be successful community facilitators for a number of reasons: 1) Health plans came about from communities getting together–why could this heritage not be extended to an online environment? I realize most Plan members perceive their health plan to be only about claims and benefits, but that’s in large part because of the plans not realizing the potential. 2) Plans have a captured audience which allows for awareness campaigns and targeted messaging. Although social media by itself creates awareness and word of mouth, the effort of driving traffic to communities should not be underestimated. Plans are in a strong position to drive cost-efficient campaigns. 3) Plans have a lot of data and tools at their disposal that could provide enriched and integrated community experiences (not available via FB or stand-alone communities like patientslikeme), thereby increasing the value of the community to the member. For instance, members in a cancer community may not only be able to connect to other members with similar issues for support, advice and navigation, but may also see deep links from the community over to the Plan’s provider directories, cancer treatment cost estimators w/personalized out-of-pocket estimates or to community doctor ratings, etc.
In full disclosure, I work for a Plan that is moving in this direction. It takes time and effort, but believe both the delivery system and Plan communities could be valuable and highly viable sources for patients and members to connect with each other and gain advice, navigation and rewards. All based on the KEY premise that we (the Plan or delivery system) provide the frame, but leave it (yes, leave it) to the community members to paint the picture inside of the frame…
Never apologize for a long comment, esp one filled with such interesting observations! Thanks so much for sharing them.
I bet for every 1 good outcome like the ones mentioned in Slate and Huffpo, there are 100 false or bad outcomes. I’m all for playing an informed and active role in your own healthcare, but you have to be selective in your information sources. Sure there are occasional nuggets of wisdom on facebook, but there is also a mountain of bad info on there.
Nice to meet you, Eric, and thanks for representing the voice of skepticism (or realism, depending on your point of view).
I’m biased toward data and proof. I want evidence. Here’s what I’ve got to offer, based on a national survey of American adults from September 2010:
1) Social networks are popular, but used sparingly for health research.
2) More people report being helped, rather than harmed, by online health information.
If you know of other studies, please post them.
Thx for your nice note, tweets and insights!
You raise a good point that there’s a lot of bad info out there, but it is our experience that most consumers are aware that user-generated content should be taken with a grain of salt.
We have over 65,000 user-generated postings in our member community, and it’s been interesting to watch how the community self-corrects or debates whether a certain statement is accurate. I believe that’s part of the power of engaged consumers.
We do provide medical encyclopedia content from a trusted source on our site, but it’s not part of the user-community section of the site. We also make it very clear to our members upon entry into the community that the views and opinions expressed are by members, etc… It’s a trusted environment for them, by them.
In terms of impact, we have some amazing stories of how the community has changed member lives for the better, and can we facilitate that kind of support, advice and navigation for our members, we’re happy.