Did you know some doctors once had a hand signal to warn their colleagues about internet-using patients?
I talk about this and other health care history, plus a bit about the possible future (including some market opportunities), in an interview with Alex Howard:
One study I cite in this segment of our conversation centers on the analysis of messages posted to an online breast cancer community. Researchers found that 10 of 4,600 postings were false. But forum participants corrected seven of the misleading posts, often within a few hours. Only 3 posts containing misinformation went unchecked by the community.
Sure, that’s 3 too many, but the analysis also shows 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.
I use this example to make the point that the internet can help spin conversations toward misinformation or toward enlightenment. The question is: which will we choose? Which will we nurture?
See two more videos and read Alex’s article about the recent Health Datapalooza: Peer-to-peer healthcare, e-patients, and self-tracking drive health’s social revolution.
As always, I’d welcome your own memories of our recent past and predictions for the future.
3 out of 4,600 posts contained unckecked misinformation? I would like to get similar statistics from even the best peer-reviewed scientific publications.
Does anyone believe that if you chose 4,600 articles from Nature, Cell or JAMA, you’ll be able to say that 4,597 of them contain neither misinformation nor bad or erroneous data an that you can trust blindly their results?
David Dobb (@David_Dobbs) appropriate “How to Set the Bullshit Filter When the Bullshit is Thick” applies to many of such articles. If it’s true that only 3 out of 4,600 posts could be singled out for containing misinformation, OTOH, then we have found a remarkably honest and accurate form of peer-reviewed publication. A real feast. We should ask David to comment!
In the spirit of using this blog as my outboard memory, I’ll post a link that was shared on Twitter by Karen, a fellow food-allergy mom:
Docs helping patients to surf the internet
The thread starts with a catalog of links to articles about how clinicians should guide people to credible health websites. Then it gets interesting:
“I have mixed feelings about this. Obviously, there is a lot of misinformation on the internet and many patients could use guidance. I often link to those respected type of sources mentioned above.
On the other hand, for educated patients/caregivers, I feel like this approach/guidance feels a little paternalistic, like it underestimates my ability as a caregiver to find reliable info and support.
I have learned so much over the years at FAS, which is purely a patient/caregiver support group without a medical advisor. I have seen our group get a major FA org to correct/improve its info. I have seen our group advocating things like 504s before other major groups truly got on board with them. I have seen members of our group know the info they were getting from some docs/allergists was sometimes suspect, and those members often switched docs. I’m not saying our group is perfect.
My feeling is that maybe we can be more frank. For instance, with schools, the work nicely/cooperatively together approach is wonderful when all parties come together with good intentions, but in reality, sometimes things get nasty and parents have to be prepared. We don’t have product sponsors so if a company is having lots of FA recalls, we aren’t afraid to openly call them out on it. We don’t have a med adv board, so when we say we like a doc/hospital or don’t, we are speaking from our hearts, not a sense of loyalty. We aren’t trying to raise $, so that doesn’t cloud what we do here. If I see a link with good info, I use it, I don’t want to compete with the org or discourage others from visiting a helpful site.
Also, I’m free to be critical of those respected sources. For instance, I am a huge cheerleader for FARE’s food allergy action plan (ECP), but I’m probably a huge pain in their rear concerning sesame. Another example, if I just go to the FDA site to learn about sesame labeling, I would not be able to safely figure out how to read a label for sesame.”
Check it out — it’s a great conversation about how the internet spins both ways.