When we get sick or receive a new diagnosis, we often feel alone, but we shouldn’t. There are people who have been in the same situation and are eager to help if they only knew how to find us. That is the case with my friend Meagan. She was recently diagnosed with breast cancer. She […]
peer-to-peer health care
Credible, useful, helpful, trustworthy
Inspired by a conversation with my FasterCures colleagues, I began looking into survey data related to trust and credibility, particularly: What entities and resources do people turn to when they need advice about important topics? Edelman, a global communications firm, has been measuring trust and credibility for 20 years. Their most recent Trust Barometer asked […]
How connection can lead to change
In April, Harvard Business Review published my article, “How Chronic-Disease Patients Are Innovating Together Online.” Since then I’ve been collecting other stories about people gathering online to solve their own problems — an innovation pipeline powered by what I call peer-to-peer health care. Fortunately and unfortunately, there are many examples. People living with long-term effects […]
Peer-to-peer advice for caregivers
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 […]
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 […]
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