Well well well, dare I say the times are changing? Not long ago all we ever heard was “Stay off the internet.” But a friend just said his endocrinologist and his radiologist BOTH recommended ThyCa.org to him! (Twitter: @ThyCaInc)
It’s “created and maintained by thyroid cancer survivors,” with a long list of physicians as partners and advisors:
This website has been created and is maintained by thyroid cancer survivors. Since October 1995, we have been developing a network of services that link thyroid cancer survivors and health care professionals around the world. Our mission is simple:
- To Educate, so we and our families better understand our disease.
- To Participate, so others learn from our experience.
- To Communicate, so we and our health care professionals better understand each others’ needs.
- To Support Research, for a future free of thyroid cancer.
As we in our Society think about the social change that will be required for all providers to welcome good patient communities, a discovery like this merits thought. I notice a couple of things:
- They started in 1995 – almost as old as the ACOR community to which my doctors sent me. It’s a very early community with great longevity
- Robust traffic – the site says they had 576,000 hits last month.
- A link to their medical advisors – dozens of physicians. (Note: run by patients, with physicians as advisors and partners. Participatory!)
- They display an interesting-looking “StudyWeb Acadamic Excellence Award.” As far as I can tell, that award’s extinct – the last sign of it I found was ten years ago. Anyone know anything? (StudyWeb.com redirects to an education resources site.) I personally think the e-patient world could use some standards about what workds, and I wonder if StudyWeb’s criteria could be resurrected.
What do you see? What can we learn from this organization’s effectiveness and acceptance?
On a separate dimension, look at the site’s long list of links on the left: they’re practical and clearly driven by the reasons people come to the site. The site will never win any awards for prettiness, but it wins prizes from me for being clear and user-centered.
And here’s where I get happy about the visionaries (some say crazies) who formed this Society and blogged in the early years:
“No social network Rx? Malpractice!” (This blog, 2010)
That post by SPM member Roni Zeiger MD posted wondered about some future day when it’ll be considered irresponsible not to recommend that patients consult peers. Citing the now-well-known phrase that “patients are the most underutilized resource in medicine,” Roni said (emphasis added):
…an exponential network effect happens when a group of these resources work together. A social network effect. They ask each other questions, they compare notes, they challenge each other. The discourse is often so rigorous, and so based on the data, it feels like you’re reading a discussion in a top scientific journal. Sometimes a pre-publication edition, since these people attend scientific conferences and keep track of trials that aren’t yet in the published literature.
As the work of SPM continues, I hope we can study what makes some communities become, over time, large and robust and valid from both the patients’ and professionals’ points of view.
p.s. One more point – one of the first lessons I learned about medicine in my odyssey is that it’s vast, vast, vast, like the Pacific – “You can know a ton about the Great Barrier Reef and not know a thing about the ecosystem or customs around Anchorage.” This is a great case in point: with all the work we’ve done in the society in its first four years, this is the first time I’ve ever heard about this large and long-lived patient community.