In May, I spoke at the Chronic Care and Prevention Congress about my most recent report, “Chronic Disease and the Internet.”

I talked about the social life of health information and the internet’s power to connect people with information and with each other.  Living with chronic disease is associated with being offline – no surprise. What’s amazing and new is our finding that if someone can get access to the internet, chronic disease is associated with a higher likelihood to not only gather health information but to share it, to socialize around it.

I built my talk around two examples of how health care can either take advantage of patients’ shared wisdom (and innovate) or ignore it (and fail).

My innovation example was CureTogether’s crowd-sourced migraine findings: 147 treatments were evaluated and ranked according to their effectiveness and popularity, with some surprising results. My fail example was taken from Diana Forsythe’s classic essay, “New Wine, Old Bottles.” Designers of a migraine information resource asked a single doctor what he thought patients should know, rather than going directly to the patients. Not surprisingly, the number one question asked by newly diagnosed migraine sufferers was not addressed: Am I going to die from this? Ridiculous to a doctor, but essential to a patient.

My talk concluded with a challenge to the group:

If chronically ill patients can find ways to connect and learn from each other, why can’t your organizations find ways to connect and learn from them?

Allan Khoury, MD, PhD, Chief Medical Officer of Walgreens Take Care Health Systems, asked me one of the first questions:

Should Walgreens train people in how to use PatientsLikeMe?

Whoa. Tipping point moment. Imagine the scene:

Here’s your new prescription for your life-changing diagnosis, ma’am, and here’s someone who’s going to show you how to track your symptoms and make sure the treatment is working for you.

Back on Earth, I hedged. I hadn’t even mentioned PatientsLikeMe. I’m not supposed to make sweeping judgments. So I did what I always do when I get a good question. I shared it.

First, I tweeted a more general version:

Intriguing Q after my talk: should Walgreens offer internet training, advice re pt communities? #hcsm

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Joanna Ptolomey, via Twitter, voted for health literacy training “where people are living, working, existing.” So did Shelia Cotten. Mark Hawker clarified, “There’s a difference between training and education. Would need to be a combination to be beneficial in any way.”

But what if I had tweeted the original question, with its focus on PatientsLikeMe? Would it have invited a different response, one more focused on privacy,  such as this quote from a recent New York Times story, “When Patients Meet Online, Are There Side Effects“?

You don’t know who is being paid to moderate. You don’t know who’s listening in to your conversation. You don’t know what exactly they are focused on and what they are doing with the information. – Jeff Chester of the Center for Digital Democracy

Frankly I was more interested in the general response, whether someone had a small patient community in mind, like a Yahoo group, or a large one, like MedHelp, Inspire, or Diabetic Connect.

The second thing I did was to email my friend Maxine Rockoff at Columbia University, who is one of my health education and internet literacy gurus. She sent back an amazing email with as many questions as answers: Should we teach general internet skills or hone in on specific tools, such as a personal health record or a certain community? And, of course, she also shared the question with colleagues, with amusing (and circular) results:

This morning I threw the question out at a Department of Biomedical Informatics faculty meeting and one response was “Go to the e-patient web site.”  So that brings it right back to you.   What would you and Ted Eytan and Dave deBronkart do?

The third thing I did was talk with Alexandra Carmichael of CureTogether and Jamie Heywood of PatientsLikeMe.

Alex saw this as an opportunity for behavior change and patient empowerment on a massive scale. She pointed me to BJ Fogg’s Behavior Model which “shows that three elements must converge at the same moment for a behavior to occur: Motivation, Ability, and Trigger.”

She noted that a newly-diagnosed patient, standing there with their new prescription, may have the motivation to reach for a different level of involvement in their health. Walgreens has the ability to be there, at the moment of motivation, and provide expert advice. Alex said the offer of patient community training at Walgreens would be a “hot trigger” – an irresistible opportunity that someone can take action on right away.

Jamie’s first reaction: We do not comment on ongoing negotiations. (I think he was kidding.)

He then pointed out that of course this makes sense as much for Walgreens as it does for patients:

“The formal medical systems (both providers and payers) have generally chosen not to enter into a rich meaningful dialogue about health with their consumers (partly because they make so much profit from their proprietary networks and partly because they may not want to learn what consumers have to teach them)…

“This leaves a huge gap and you see the pharmaceutical industry, pharma benefit management companies, pharmacies, lab/diagnostic providers, and everyone in the health product business scrambling to understand and integrate into the emerging health information network.  The good ones know that this is the equivalent to the introduction and rise of the search companies’ power on the internet.  They know that the health information network, when it is fully connected to consumers, will drive most treatment decisions and determine the value and profits of health products.”

The idea of a huge drug store chain partnering with a start-up is not so far-fetched, by the way. Rite Aid is now offering online consultations with pharmacists via American Well. What’s next?

Susannah Fox is Associate Director, Digital Strategy at Pew Research Center’s Internet and American Life Project, and blogs at e-patients.net.

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