Category Archives: patient networks

Sincerity in the storm (welcome to our world)

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Hurricane Sandy “slapped the snark out of Twitter” for media reporter David Carr. In his column today, Carr discusses a newfound sense of community, which will sound familiar to anyone who uses social media to navigate an acute or chronic health condition:

- Twitter turns serious during a crisis

- Certain users and hashtags can yield very useful – even life-saving – information

- Posting and RT’ing make you feel like you’re contributing to the public good

- Both global and local information can be meaningful in a crisis

- Misinformation spreads – and can be stamped out – very quickly

My favorite line is Carr’s description of an evening without power: “We built a fire and sat around a hand-cranked radio, but I was diverted over and over by the little campfire of Twitter posts on my smartphone.” How many of us have felt the same way about the campfire of a hashtag like #bcsm or #whatifhc or the bonfire of comments on a favorite blog or health care discussion site? The camaraderie will warm your spirit, yes, but you may also find the just-in-time someone-like-you who has exactly the practical advice you need.

If you’re new to this concept, you might be interested in research documenting it: Peer-to-peer Healthcare. You might also want to learn more about the history of the e-patient movement and its current form as the Society for Participatory Medicine.

The tools and communities we build online have real and lasting consequences for our health and the health of our offline communities. Hurricane Sandy is just the latest example and Twitter is just the latest tool. Welcome to the world of e-patients.

Listening to patients at Medicine 2.0

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I wrote a long post on e-patients.net about my one day at Medicine 2.0 on Saturday. Here are a few highlights — people who focused on listening to patients and caregivers:

“To learn

listen well

to impressions

voiced by patients

first”

- Sally Okun of PatientsLikeMe closed her presentation with this poem. Continue reading →

On the internet, the expression of your spirit has nothing to do with the expression on your face.

Quote

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- the line I added to my speech on the train up to Philadelphia last Saturday.

I wanted to convey to the people attending the 2012 Moebius Syndrome Conference that I admire them and see them as pioneers of peer-to-peer health care. My full post is on e-patients.net: Health Care Hackers

When Patients Band Together: Far From a Disgrace–Susannah Fox

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When it comes to news sites, I love scanning readers’ comments as much as the original articles. Comments are an unfiltered feed, a window into public opinion (in other words, catnip for someone like me).

One thread caught my eye recently. Ron Winslow wrote a very nice piece in the Wall Street Journal about how clinicians are tapping in to existing networks of patients. See: “When Patients Band Together: Using Social Networks to Spur Research for Rare Diseases; Mayo Clinic Signs On.” Reader comments filled in blanks left by the article, which was a lovely introduction about one example of peer-to-peer health care, not a definitive guide. The article — and the comments — are having a significant impact, as this comment from Katherine Leon shows:

It has been a tremendously exciting week. We’ve heard all sorts of wonderful stories. An ER doc read the article in the morning, and that afternoon, realized he was treating a woman with SCAD — the first case he’d seen in 9 years. Women with recurrent SCAD are sharing the article with their doctors, and vice versa. Men are benefiting too; a cardiologist in Italy contacted Mayo about a man and woman being treated for SCAD in his cath lab. They are applying to the virtual registry.

So as you say, the power of patient groups works!

Indeed, the power of patient groups is in full effect here, but so is the power of the mainstream media. Continue reading →

Alpha Geeks in Health Care

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Here’s how tech guru Tim O’Reilly describes his work:

So often, signs of the future are all around us, but it isn’t until much later that most of the world realizes their significance. Meanwhile, the innovators who are busy inventing that future live in a world of their own. They see and act on premises that are not yet apparent to others.

In the computer industry, these are the folks I affectionately call “the alpha geeks”, the hackers who have such mastery of their tools that they “roll their own” when existing products don’t give them what they need.

Watching the alpha geeks — people whom more traditional marketing analysts might call “lead users” — can give insights into the future directions of technology, gaps in existing products, and new market opportunities.

Who are the alpha geeks in health care? Continue reading →

Examples, please: peer-to-peer healthcare–Susannah Fox

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I’m writing an article and would love to tap into this community’s knowledge.

I know of a few examples of clinical practices using Facebook and Twitter to connect with patients, such as MacArthur OB/GYN, but I’d love to learn about other examples, especially ones which use social networking tools to connect patients and caregivers with each other.

Also, I know of patient-led groups which are powerful resources for their members, such as ACOR.org and the many groups affiliated with the National Organization for Rare Disorders, but again, I’d love to learn about some new examples, especially ones which are organized around common conditions like asthma or high blood pressure and (bonus points) have bridged the gap to include connections with clinicians.

Finally, when I think of behavior change writ large (ie, population-level) I think of organizations like Weight Watchers and Alchoholics Anonymous. Are there any other health groups that come close to those two in terms of scale and notoriety? MedHelp claims 12 million monthly visitors, for example. Does anyone else have those numbers?

Comments, please!

Peer-to-peer healthcare on NPR–Susannah Fox

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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.

Healthcare Out Loud

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Last fall, at the e-Patient Connections conference, I gave a sneak preview of some survey results which are set to be have been released on the Pew Internet site on Monday, Feb. 28. I hoped to spark new ideas for a savvy, plugged-in audience and I ended up surprising even myself with some of what I talked about. Watch:

Around minute 7, I share the results of a survey question that was inspired by some research conducted in 1999 by Tom Ferguson: E-Patients Prefer eGroups to Doctors for 10 of 12 Aspects of Health Care. Continue reading →