A sign of the times: thyroid cancer patient says TWO docs recommended a patient organization

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:

ThyCa logoThis 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.

Bring more!

 

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Posted in: e-pts resources | patient networks | research issues

 

 

Comments

5 Responses to “A sign of the times: thyroid cancer patient says TWO docs recommended a patient organization”

  1. Just imagine… having the flu and never knowing a single thing about what it’s like for other folks who have or have had the flu: you’d be flying blind with no idea of what to expect, what symptoms were truly unusual/potentially dangerous, especially for people similar to you in age/condition, and the pros and cons of various treatnent options.

    The flu can kill but it’s less scary because we know a lot about other people’s experiences and therefore are better able to confidently observe and report on our own condition and will have better questions for our doctors so we can choose the right treatments.

    With a serious disease, contact with other patients is a million times more important, because inadequate information – unidentified symptoms, side effects, drug interactions, tests you should’ve had, treatments you don’t know about, when to be scared and when to just march on – can kill you.

  2. Gilles Frydman says:

    This is FUN! Thank you for bringing up ThyCa.org, an old and highly effective advocacy organization that understood, before so many others, the value of focused patient communities and of the network effect in these communities.

    In the era of exponential medicine, believing a doctor can know all about a single serious condition is absurd.

    Patient communities like ThyCa.org or ACOR where you have patients treated by all the great specialists, have a much higher chance of noticing anything new faster than an single physician could ever do.

    Thanks for reminding me of Roni’s post. We know how accurate his comments are. It remains surprising to me that in 2013 the majority of doctors haven’t yet understood the significance of patients peer-to-peer exchanges.

    • Remind me about the term “exponential medicine” – I know I’ve been hearing about it but don’t remember where – is it formally defined?

      It evokes thoughts of Sugatra Mitra’s TED Prize video, Build a school in the cloud, which calls into question not just the value of schools (as an institution) but the value of knowing things compared to the value of knowing how to find and learn new things, as knowledge explodes. (Exponentially? Is that the point?)

    • Mandy K says:

      I agree with Gillian.

      How many times have we heard of patients finding thing that their doctors either neglected to tell them or had not known in the first place!

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