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 […]
Lessons learned about hospice care
A loved one recently went over the cancer waterfall and I dove in after him, keeping his head above water long enough to say goodbye to everyone. It was an intense four weeks of caregiving – two in the hospital and two at home, in hospice. I am sharing one segment of our story to […]
Elegy for A. and M.
I grew up rich in cousins. I spent holidays with my first cousins and lived, starting at age 11, in the same town with second cousins (the children of my mother’s first cousin) AND a first cousin twice removed (my grandmother’s first cousin – each generation that separates us is the “removed” part). Don’t worry, […]
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 […]
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