The Other 80

Claudia Williams created The Other 80 podcast to talk about how medical care only accounts for 20% of health outcomes. The other 80% includes factors like food, housing, transportation options, social connection, etc. I was honored to be interviewed for episode #27, now available wherever you listen to podcasts.

You can hear in my voice how much I adore Claudia, not only because she’s a friend, but also because I knew we were going to get into some great topics:

• Why the #WeAreNotWaiting movement for diabetes innovation represents the full stack of the patient-led revolution
• How Sara Riggare PhD draws attention to the abundance of work that patients and caregivers do to care for themselves and the potential of personal science to craft new strategies
• Why Amazon reviews are a deep well of market insights as people testify for or against health-related products, like pillboxes
• How the Patient-Led Research Collaborative gave us a preview of a possible future for scientific research, shifting power to people with lived experience
• Why the Stanford Medicine X conference was an opportunity for patients, survivors, and caregivers to step into their power and for clinicians and health care leaders to listen and learn in new ways
• How a healthy online forum can stamp out misinformation (bad advice posted by mistake) and disinformation (posted on purpose by scoundrels)
• Why I believe there is a market for peer-to-peer health care because it is happening offline and online, everywhere we look and it is work that needs to be supported

One of the avenues Claudia and I explored is the difference between the successful data liberation movements (like OpenNotes and the diabetes rebel alliance) vs. the lone voice of Hugo Campos, who is asking for access to his own cardiac device data so that he and others can engage in post-market surveillance (as an example of the work that patients could do). “Data that originates in my body, by a device that I own, should not be under the exclusive control of a corporation,” says Hugo. “It is not their data. It is not, in a sense, my data. It is OUR data.” He makes a compelling case yet he has made little headway.

I refer to the video of the “dancer on the hill” and the importance of the “first follower,” in the words of Derek Sivers, who gets other people up and dancing.

Here’s the video, in case you haven’t seen it:

Sivers captured more lessons in this post about how to start a movement:

• “If you want to be a starter, have the guts to stand out. Make your actions easy to imitate. Fun to follow. Attract attention. Show everyone what you’re doing.
• If you find a lone nut doing something great, have the guts to follow him/her. You’ll also stand out, but you’re serving one of the most important roles in making this a movement. Show everyone how to follow.”

What do you think are the ingredients of successful health movements? Where have you seen a peer-led group gather to raise their voices, solve problems, and gain the resources they need to scale their ideas? Where have you seen people fail to get mainstream attention — and why do you think that happened?

Comments are open!

Featured image: A screen grab of the TED video.