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.
Roni Zeiger says
This perspective is a critical balance to all the discussion about how much dangerous misinformation one can find when searching for health information online. Indeed, the world is full of good and bad information, and our job is to help each other create and find the good. Thank you for doing just that, Susannah.
Susannah Fox says
Yes – Pew Internet (and others’) research shows that general search is the first stop for most people looking for health information. But I think the next phase of development is the segment of people (esp. those living with chronic conditions) who are looking online for someone who shares their same health concerns, to be guided along the path by a fellow expert in that particular condition.
As for misinformation, which does remain a significant concern for a lot of people, your best bet might be to join an expert patient community. A 2006 BMJ study analyzed the content of an online breast cancer forum and found that “10 of 4,600 postings (0.22%) were found to be false or misleading. Of these, seven were identified as false or misleading by other participants and corrected within an average of four hours and 33 minutes (maximum, nine hours and nine minutes).”
Translation: Only 3 out of 4,600 posts contained misinformation and went unchecked by the community. Excerpts of the “bad” postings show that this was a high-level medical discussion among women whose lives were at stake. Group members talk about prescription-drug shelf-life, disease-staging parameters, and the likelihood of recurrence within five years – serious topics, taken seriously. The excerpts show that patients, when given access to sound medical information, cite it and put it to use.
See: Esquivel, et al. “Accuracy and self-correction of information received from an internet breast cancer list: content analysis.” BMJ. 2006 Apr 22;332(7547):939-42. See: http://www.ncbi.nlm.nih.gov/pubmed/16513686
Well said! Amazing how in the middle of a storm, in the middle of a camp-fire analogy, Twitter recreates the warmth and need for people to touch, even if only in 140 characters. I for one, know that feeling.
kathy kastner @kathykastner says
Thank you for (once again) synthesizing information.
Twitter has been my motivation, has given me a research pool, feedback ‘n’ focus group, and vehicle for dissemination.
Twitter (with nods to you and PEW) will be the star of my TEDtalk — about my twitter-inspired journey to figure out what exactly I should be talking about when it comes to talking about end of life,
Couldn’t’a been done without twitter-provided resources, and a virtual universe there to answer my questions, and to put forward more questions to ask.
So, in my case – it’s not a chronic illness I turn to social media for, but an universal inevitability:)
Happily, I see less negative body language when I rave about The Power and The Glory.
Susannah Fox says
Thanks, Kathy! I can’t wait to see your talk — please let me know when the video is posted.