An excerpt of a post on the Iodine blog:
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.