A community colleague wrote: Our neighborhood list serve has all sorts of ‘advice’. I’ll spare you:) Are you able to assess how peer-to-peer exchange is playing out with all of this? In the spirit of Public Q&A, I invite readers to join me in responding: Yes. I’m seeing a ton of peer-to-peer exchanges of information, […]
Public Q&A: Patient registries
A community colleague asked for advice about how an organization can boost the signal for their patient registry. Recruitment levels are not what they expected and nowhere near what they need. I’m sharing what I wrote back so that others can chime in with their advice in the comments. First, look at what successful registries […]
Project management for caregivers
I am a caregiver. I help coordinate the health and home care for an elder loved one who, for the purposes of maintaining a bit of anonymity, I will call “M.” He is a healthy, happy octogenarian. We have known each other for nearly 40 years, but we are not related by blood. I am […]
Public Q&A: Peer support for parents of teens with cancer
Helen Burstin, MD, reached out to ask if I know of an online peer-to-peer support group for parents of teens with cancer. For anyone who knows Helen: Don’t worry, it’s not for her own family. She is asking on behalf of a friend, who writes: “I’ve been able to find groups for parents of children […]
What if your clinician gave you a prescription to check out a patient group that they knew to be good?
Amy Gleason (@ThePatientsSide) captured this line of mine, delivered on a panel at the Health Datapalooza yesterday. Her tweet generated an interesting cascade of reactions ranging from: “This is potentially dangerous” to “This is obvious (and old news).” I thought I’d expand on my observations and see if people want to expand on theirs in […]
Chasing cures
Bon Ku, MD, a regular on the TV show “Chasing the Cure,” and David Fajgenbaum, MD, MBA, author of CHASING MY CURE, invited me to join their upcoming panel at the Health Datapalooza. Guess what title we chose? We are nothing if not consistent: Chasing cures. We intend to focus on how open source principles can break […]
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