Please join me in honoring and learning from caregivers, first by watching Sarah Kucharski’s powerful, personal story: Second, watch my talk about the bigger picture and how people can help: http://www.viddler.com/v/14c53db8 Now: what’s your story? What roles do you see for caregivers in health care or in your own life? Please share your thoughts in […]
The following articles stopped me in my tracks this week, not least because they relate to my last report, “Family Caregivers are Wired for Health.” Please share what you’re reading — or your thoughts about these articles — in the comments. 1. Dementiaville: How an experimental new town is taking the elderly back to their happier […]
Here are three articles spinning around in my head today: A Letter to Patients With Chronic Disease – written by Rob Lamberts, MD, in 2010, tweeted this morning by Ronan Kavanagh, MD. Key quote: “So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease […]
Erin Moore, the mom-warrior who created that video, also wrote this essay: Are patients a distraction? I think not… Watch, read, cry, be inspired. I sure am.
When I was writing the Pew Research report, “Peer-to-peer Healthcare,” I switched back and forth between numbers and stories, national survey data and notes from my fieldwork among people living with rare conditions. I learned to scan my spreadsheet of rare-disease respondents for women’s names since they seemed to stop at nothing to protect their […]
– Zoe Brain, in a comment on the New York Times magazine story, The Hazards of Growing Up Painlessly, which garnered an extraordinary display of public ignorance and fellowship around rare conditions. My hope is that the reporter and editors read every comment and learned from the community peer review of the article.