Inspired by Alvin Toffler’s quote: “The illiterate of the 21st century will not be those who cannot read or write, but those who cannot learn, unlearn, and relearn,” Ellen Hoenig Carlson gathered 12 lessons for health care executives in 2010. My contribution: Missing an Opportunity.
Connected patients spread new ideas, new treatments, and new ways of approaching a condition. Patient networks can help you anticipate change and innovate in the right direction. Social media can be a window into their world.
Pew Internet surveys show that 8 in 10 Americans have access to the internet. Social media use is trending up. Health is holding steady as one of the most popular activities online. E-patients are listening to each other, consulting hospital reviews and doctor reviews, and posting which treatments work for them.
People living with chronic disease, your best customers, are less likely to go online. But their loved ones may fill in the gap. One-third of American adults care for a loved one and eight in ten of those caregivers go online. One-third of adults experienced a medical emergency in the past year, either their own or someone else’s. They are online too. A medical crisis flips a switch in people. It makes them want to become superheroes and save a life if they can. The internet is very often their weapon of choice.
Patients and the people who love them are not just your target audience, but your colleagues. They are a resource for innovation and knowledge. And their rapid-learning system already exists: social media.
In October I had the opportunity to address an Institute of Medicine workshop that brought top cancer researchers together to share insights on how to better use data in their work. When it was my turn at the podium, I talked about Flickr, YouTube, Facebook, MySpace, and how people use each one of these tools to create, gather, and share health information. And I told them that I’d been using Twitter all day to bring my network into the room. The discussion was not limited to this assembly, but potentially thousands of people who were learning about their plans.
As I returned to my seat I was surprised to hear Paul Wallace’s advice to the audience:
If all of this sounds scary, remember your oncology training: denial, anger, bargaining, acceptance.
Scary? My data? This is normal, every day internet use, especially compared to what they were about to hear from Gilles Frydman of ACOR.org, Simone Sommer and Josh Sommer of the Chordoma Foundation, and Jamie Heywood of PatientsLikeMe.com. Patients telling each other where to go for treatment, tracking drug side effects for post-marketing surveillance, owning their own data, refuting their doctors’ advice, raising money to direct their own experiments. They are the radicals, the superheroes, the wild-eyed optimists who believe they can transform medicine from the bottom up.
But there was no denial, anger, or bargaining by anyone in the workshop. There was listening. There were smart questions. There was learning. I was dazzled by the minds which were so open, curious, and, well, rapidly learning.
Social media is simply the current expression of patient activation and engagement. But this time e-patients are part of a larger cultural change that assumes access to information, enables communication among disparate groups, and expects progress.
If you don’t have patients and caregivers on your team, you’re doing it wrong.