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Susannah Fox

I help people navigate health and technology.

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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

Tracking the trackers

May 13, 2020 By Susannah Fox 25 Comments

In Dark Times Shine Your Light Brighter

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 […]

Filed Under: health data, participatory research, patient networks, peer-to-peer health care, research issues Tagged With: 23andme, Ancestry, Body Politic, COVID19, cystic fibrosis, Health Data, Open Humans Foundation, patient registries, patientslikeme, Webmd

Building an intake valve for new ideas

May 7, 2020 By Susannah Fox Leave a Comment

A woman building an device by hand

Imagine this: You and your colleagues know there are problems to be solved. You have resources to offer, such as funding, access to experts, and publicity. You are pretty sure there are people with great ideas out there, asking questions, defining the scope of the problems you care about, seeing things that you can’t see. […]

Filed Under: hc's problem list, key people, positive patterns Tagged With: George Hacks, Hhs, innovation, prize competitions, Robert Wood Johnson Foundation

Pandemic problem-solving

April 29, 2020 By Susannah Fox 9 Comments

Hands feed fabric into a sewing machine

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 […]

Filed Under: peer-to-peer health care Tagged With: COVID19, maker movement, peer-to-peer healthcare

Surviving a pandemic like an artist

April 14, 2020 By Susannah Fox 9 Comments

Snow covered mountains with text reading: Life is so bizarre it must be a bad dream

Through her work as a film-maker, Maggie Whittum helps the rest of us make sense of this upside-down world we find ourselves in. And she reminds us that, unfortunately, this disorientation is familiar to people who survive stroke. Andrew Simonet, founder and director of Artists U, recently wrote an essay entitled, “This is What We […]

Filed Under: beauty and wonder, peer-to-peer health care Tagged With: Andrew Simonet, art, COVID19, Maggie Whittum, stroke

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Recent Comments

  • Lisa Suennen on Wow! How? Community: “That is a beautiful story. Kids always have the best answers” Aug 29, 11:31
  • Susannah Fox on Lessons learned about hospice care: “Zoe, thank you for the unvarnished comment! We need to go into end of life with our eyes open in…” Aug 5, 14:20
  • Zoe on Lessons learned about hospice care: “I despise home hospice and the entire industry can kiss my ass. I was duped into caring for my dying…” Aug 5, 03:45

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