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.
my talk around two examples of how health care can either take advantage
of patients’ shared wisdom (and innovate) or ignore it (and fail).
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?
Khoury, MD, PhD, Chief Medical Officerof Walgreens Take Care Health Systems, asked me one of the first
Should Walgreens train people in
how to use PatientsLikeMe?
Tipping point moment. Imagine the scene:
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.
Earth, I hedged. I hadn’t even mentioned PatientsLikeMe.
I’m not supposed to make sweeping judgements. So I did what I always do
when I get a good question. I shared it.
First, I tweeted a more general version:
Q after my talk: should Walgreens offer internet training, advice re pt
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.”
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“?
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
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.
(Plus we’re already having that privacy conversation elsewhere.)
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
The third thing I did was talk with Alexandra
Carmichael of CureTogether and Jamie Heywood of PatientsLikeMe.
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
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
We do not comment on ongoing negotiations.
(I thinkhe was
He then pointed out that of course this makes
sense as much for Walgreens as it does for patients:
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
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
Susannah Fox is the associate director of the Pew Internet & American Life Project. She blogs regularly at e-patients.net.