Longtime readers of my blog know that I’m a caregiver. I helped care for my grandparents and my father until the end of their lives and I’m currently caring for an “uncle” (he is my cousin’s widower, but it’s easier to just tell people I’m his niece). I’m also obsessed with amplifying the lessons we […]
peer-to-peer health care
Patient-led research is a key element of pandemic response
On August 12, the Council of Medical Specialty Societies hosted the fifth webinar in their series focused on COVID-19 and clinical registries. If you missed it — or want to watch it again — here’s the video: Here, also, are the panelists’ slides and a collection of tweets posted in advance of and during the […]
Advancing clinical registries to support pandemic treatment and response
The biomedical research model has a blind spot. People living with a condition or disease are traditionally seen as passive sources of data, not active participants in the research. We as a society miss out on promising avenues of inquiry. It’s time to widen our lens. On August 12, I’ll moderate a discussion about how […]
How peer-to-peer health advice can help people take their meds on time (and so much more)
(Yes, it’s the third post in 5 days from me, but when you’ve got cool stuff to share, why wait?) Matthew Zachary‘s podcast, Out of Patients, is one of my favorites because he brings his whole self to health care discussions, as you’ll hear in our conversation. It was a pleasure to unpack my latest […]
Tracking the trackers
UPDATE: On August 12, I’ll moderate a discussion about prioritizing patient engagement and inclusion of patient-generated COVID-19 data in clinical registries. It is being offered free and open to the public. Read a preview post and register here for the webinar. Every day I see a new example of a survey or other tool to […]
Pandemic problem-solving
The COVID19 pandemic is forcing everyone to learn new skills on the fly. Clinicians are teaching each other how to hotwire a ventilator to serve more than one patient. People are 3D printing spare parts for medical equipment and learning how to sew protective masks. Parents are sharing strategies for convincing their teenagers to stay home – and […]
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