Because I’m a doctor and I know a lot of people in the health care space, people ask me all the time for referrals. A friend with a newly diagnosed autoimmune disease, a loved one with a terrifying cancer sentence – who should I talk to?? I used to depend on the amazing clinical colleagues I’ve worked with, and I still do (ongoing thanks to all of you!). But recent experience with a newly diagnosed relative, I realized: the place we turned immediately was a social network. An earlier version of me would have said to that, WTF? You’re going to have your relative talk to a bunch of people who dismiss science and spew anecdotes about which vortex in Arizona made them feel like their tumor was shrinking? The slightly wiser me responds: the patient is the most underutilized resource in medicine. No one has a stronger incentive to find out who is the best specialist, what is the latest randomized controlled study, than she whose life depends on it. Except maybe she whose son’s life depends on it. And these people are talking to each other.
This isn’t meant to be an endorsement of any service in particular, but I have some personal experience with ACOR. The point above about the most underutilized resource in medicine – well, 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.
Are there countless forums out there with misinformed, even dangerous advice? Absolutely. There are also doctors that offer the same. I do my best to provide my patients, and my friends and loved ones, with the best advice I can. Today, that often includes a referral to a social network. Such resources will become increasingly recognized as a critical component of health care. Indeed, we will get to a point when it is often malpractice to not offer a social network prescription.
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This is really great – I do see it as an extension of the advice physicians have been giving for years: try support groups. On top of finding people with shared experiences, I see value in just the act of encouraging social networking. My grandfather is in his late-80s and was diagnosed with bladder cancer. His life changed drastically from being active to being sedentary and mostly at home all day. His oncologist recommended he join Facebook so that he isnt closed off from all social interaction. I think it was healthy advice and helps him stay in touch with so many people that he otherwise would rarely have contact with…Moreover, I appreciate that you point this out: doctors can also give misinformed, potentially dangerous advice. Many patients take physicians at their word. Engaging online is just another way they can take a more active role in their health care.
What a great post. There is no substitute for patient involvement in their care. There is no better prescription to incubate that involvement that spending some time absorbing the emotional and informational experiences of others. One of the most common searches in health (and you uniquely can check me on that) is “is what I’m experiencing normal” The idea of “normal” is part science and part social. Great medicine needs to address both.
Thanks, Ted! Yes, “is my experience normal” is what people are typically asking, both in the doctor’s office and online. I look forward to a ubiquitous prescription pad that has social rx as default.
Roni, I quoted you during the Connected Health symposium’s panel on online communities – your vision definitely generated a buzz in the room. The ensuing discussion was excellent among the panelists, but I was most proud of the fact that we included the audience. Favorite moment: a nurse who stepped up to the mic to say, Yes, that is what I do (help people navigate to good online resources, including communities).