Why Sharing is the Future of Healthcare

Imagine living with a condition so rare that every time you see a new doctor they confess to Googling it outside the exam room door.

Peggy, a woman I met in my fieldwork, lives with Marfan syndrome, a condition that affects the connective tissue of 1 out of every 5,000 people in the U.S. She developed chronic kidney disease late in life and realized that she was the only person tracking the interactions of all her medications. She stayed in touch online with people who share her conditions, and when a doctor prescribed a drug that Peggy knew to be lethal for her, she spoke up.

“When I explained to the prescribing doctor that I would not take it,” she recalled, “he challenged me and told me that for 20 years he has been telling all his patients to take it and no one else has ever complained.” But Peggy would not back down. She suggested the doctor look online to see for himself. He returned to the exam room a few minutes later to say thank you, promising that his practice would change in the future to screen for people with her combination of conditions so they would not get that drug.

Peggy’s story, of course, is exceptional. Few of us live with such rare and serious conditions. We amble along, not too concerned as long as we can afford our medications and they seem to be working.

But Peggy’s story is also a template for a more universal need. Millions of people have intimate, first-hand knowledge of a wide range of drugs and, up until now, had no way to share it.

For example, the Centers for Disease Control estimates that about half of U.S. adults took a prescription drug in the past month, but just 3% of internet users have posted a review of a drug or treatment online, according to studies I led at the Pew Research Center. That gap represents the gulf between a vast need and available resources. And it also demonstrates how much value could be created if each of us took a very simple, very human, action: To share what we know.

What if all of us could share what we think – what we really think – about the drugs we take? What if we, like Peggy, could benefit from the experiences of other people who share the same health conditions and concerns?

I believe that peer-to-peer sharing of experiences could transform health care.

Another example that might be closer to home: we often feel an undercurrent of worry when we take a generic drug. The formulas are the same, but do they really work the same way? Are there NO differences? How can we be sure?

One review article suggested that both physicians and patients give in to that undercurrent of worry and report more variance between two anti-epileptic drugs (AEDs) than really exists. “In the absence of better data,” the study authors write, “physicians may want to consider more intensive monitoring of high-risk patients taking AEDs when any switch occurs.”

PatientsLikeMe is one community of people who are collecting that “better data” by meticulously tracking their own symptoms and reactions to treatments. One PatientsLikeMe member I interviewed said that she was unwittingly switched from one drug to another and experienced such significant changes in side effects that she considered abandoning treatment altogether. What stopped her was the testimony of other members who had experienced the same issues. Their stories – and data – helped her to see that she was not alone and should talk with her doctor about trying different versions of the same medication.

On a larger scale, Iodine is experimenting using Google Consumer Surveys, collecting people’s experiences with drugs. The questions are remarkably simple, first asking people if they have taken a certain drug in the past year and, if so:

• What’s your overall satisfaction with this drug? Was it worth it or not worth it?
• How well did it work for your condition?
• How much of a hassle was taking this drug?

These are the sorts of questions a friend might ask, but the answers are coming from thousands of people instead of just one. In aggregate, a picture starts to emerge about the relative usefulness of a drug – or, for example, how the generic matches up against the brand-name version.

Iodine is building on the foundation of what I’ve seen in my fieldwork over the last decade: that people are ready to learn from each other. They just need the tools and the opportunity to do so.

I’ve been advising Iodine for the past few months, helping them connect the raw material of patient-reported data with the very human need to understand another person’s experience. Now I’d love to hear from you: What would you share, if you could? What do you want to learn? Please share your ideas about where Iodine should take this project next.

Susannah Fox is a healthcare entrepreneur, a pioneer in health research, and an advisor to Iodine.

Photo by Nan Palmero, via Flickr

Originally published at www.iodine.com on October 30, 2014.