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Susannah Fox

I help people navigate health and technology.

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Tidepool

Wow! How? Patient Data Rights

February 8, 2024 By Susannah Fox 2 Comments

Wow! How? Health

Until relatively recently, people living with diabetes were shut out of conversations about improving the devices that keep them alive. Device manufacturers saw clinicians as their customers, not patients, and nobody was asking them to change that stance, including the FDA.  Patients and their loved ones were grateful to have insulin pumps and continuous glucose […]

Filed Under: health data, key people, Networkers, policy issues, Solvers Tagged With: American Diabetes Association, Anna McCollister, Dexcom, diabetes, Fda, Howard Look, MIT Press, Networkers, Rebel Health, Solvers, Tidepool, Wow! How? Health

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

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Recent Comments

  • James on Wow! How? Obesity Treatment: “Inspiring read! Ilant Health’s holistic, shame-free approach to obesity care is exactly what’s needed to address a complex condition with…” Sep 30, 01:23
  • Susannah Fox on Caregiving in America: “I hear you, Mickey! You likely already know about Caring Across Generations and other organizations that have tried to move…” Sep 25, 14:51
  • Mickey Alderman on Caregiving in America: “Interesting information. Being unpaid is a huge issue that has been ongoing for decades. The question we keep asking is…” Sep 25, 10:42

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