We have a “last mile” problem in patient communities. In the first post of this series, I asked for general advice about finding your people — the peers who could give you advice about your health condition and answer even your most secret questions. Now I’d like to focus on how someone would approach getting […]
How might we empower people to participate in research about their own diseases or conditions? Which models work best for organizations solving medical mysteries or improving care for those living with rare conditions? These are two of the questions raised by a New York Times story today: “His doctors were stumped. Then he took over,” by Katie Thomas […]
May 10-16, 2015, is Food Allergy Awareness Week. I am grateful to the women (and a few men) who help me care for my son with food allergies. I’ve never met most of them in person, but they are there for me, 24×7, answering questions and sharing resources.
A community colleague recently asked me where he might find the latest numbers on the percentage of U.S. adults who participate in online patient communities. In the spirit of “public Q&A” I’d like to share my answer and ask people to add tips about other resources in the comments. Up until July 2014, I led […]
All signs point to a social revolution in health. As I’ve put it, the internet gives us access not only to information, but also to each other. Crucial advice can come from a just-in-time someone-like-you as well as from a clinician. So what happens to people who are shy or introverted? If sharing and learning […]
Conference tweets are a little like brunch pics on social media. Sometimes I want to reach out and say, “Shhh, it’s OK. I’m so happy that you’re happy with your eggs, but you don’t need to show them to me.” Then again, sometimes you see a pic that makes your mouth water and you think, […]