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Susannah Fox

I help people navigate health and technology.

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All of Us

How connection can lead to change

November 11, 2020 By Susannah Fox 30 Comments

Screenshot of Harvard Business Review article about how chronic disease patients are innovating together online

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 […]

Filed Under: patient networks, peer-to-peer health care Tagged With: All of Us, Body Politic, Brene Brown, cdc, COVID19, LongCovid, Quantified Self

Leveraging data-driven patient participation to accelerate medical research

May 18, 2020 By Susannah Fox 9 Comments

A person holds a sign "I did not get the memo that this was impossible" as 1s and 0s race beneath him

Here’s a lesson I learn over and over again: Never assume knowledge. Don’t waste your time making a point if you are not sure your audience understands the context for it. Or, as the wise Andy Kohut used to say, “If they don’t get the premise, they won’t get the joke.” Last year I spoke […]

Filed Under: health data, medical records, research issues Tagged With: All of Us, Andy Kohut, Christine Bechtel, FasterCures, Milken Institute, patientslikeme, Rachel Tunis, Regina Holliday, Tidepool, Todd Park, War on Cancer

Public Q&A: Patient registries

March 9, 2020 By Susannah Fox 17 Comments

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 […]

Filed Under: health data, patient networks, public Q&A, research issues Tagged With: All of Us, cystic fibrosis, Erin Moore, ImproveCareNow, John Wilbanks, NIH, patient registries, Quality Improvement

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  • Susannah Fox on A survey about clinical trial support groups: “Hi Diane, here is one article I found about Tirzepatide — a drug that’s in the headlines these days since…” Mar 9, 10:37
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