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Susannah Fox

I help people navigate health and technology.

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policy issues

Inventing the future

June 2, 2021 By Susannah Fox 8 Comments

Close up picture of a dandelion

If you want to meet the future faster, go out to the edges of your field of vision. Find out what pioneers and rebels are doing and learn from them. Sometimes that means taking a virtual helicopter ride up to the zenith of tech development, as I did recently, watching Dario Gil, SVP and Director […]

Filed Under: Champions, health data, patient networks, peer-to-peer health care, policy issues, Solvers Tagged With: #wearenotwaiting, Amy Tenderich, Ben Eloff, Dario Gil, diabetes, diabetesmine, Hhs, IBM, Invent Health, kidney disease, KidneyX, Maja Vukovich

From stunt to solution

March 1, 2021 By Susannah Fox 2 Comments

Motorbike stunt rider hanging off the seat, mid-air, against a blue sky

I’m so nostalgic for breathing in other people’s ideas and aerosols that I’m re-reading notes from past meetings. Today’s inspiration: a March 2018 meeting convened by Eleonore Pauwels and Todd Kuiken to discuss barriers to citizen-driven biomedical research. My notes: Community biolabs, incubators, and accelerators are like ramps and bridges for citizens to gain access […]

Filed Under: participatory research, policy issues Tagged With: Eleonore Pauwels, Todd Kuiken

“For Black people, Minneapolis is a metaphor for our world.”

June 1, 2020 By Susannah Fox 2 Comments

Pictures of black men, women, and children who were killed by police in Minneapolis since the year 2000.

The following is an excerpt from the Data for Black Lives Statement of Solidarity with Black Minnesotans, by Yeshimabeit Milner (@YESHICAN). I’m posting it as a way to amplify her voice. Please click through to read the entire essay. If you share it on social platforms, please share her Medium post directly. We at Data […]

Filed Under: health data, key people, policy issues Tagged With: Black Lives Matter

Chasing cures

February 3, 2020 By Susannah Fox 10 Comments

Decorative: blue gossamer

Bon Ku, MD, a regular on the TV show “Chasing the Cure,” and David Fajgenbaum, MD, MBA, author of CHASING MY CURE, invited me to join their upcoming panel at the Health Datapalooza. Guess what title we chose? We are nothing if not consistent: Chasing cures. We intend to focus on how open source principles can break […]

Filed Under: health data, Networkers, patient networks, peer-to-peer health care, policy issues, Seekers Tagged With: flip teaching, Health Datapalooza, Rare Disease, rare diseases

Cheese, whisky, and health data

October 14, 2019 By Susannah Fox 4 Comments

cheddar cheese being sliced by a sharp knife

Here’s how I’ve been talking about health data interoperability recently, with an appeal to people’s patriotism (and their appetites): At the start of the video, I thank Mona Siddiqui, MD, for her service as the Chief Data Officer at the U.S. Department of Health and Human Services. To learn more about her portfolio, check out […]

Filed Under: health data, policy issues Tagged With: Cambia Health Solutions, data liberation, Health Data, Hipaa, Hugo Campos, medical devices

A Matter of Trust, Perception, Risk, and Uncertainty

July 1, 2019 By Susannah Fox 18 Comments

Black and white image that resembles a Rorschach ink blot

The Big Issues Raised by the Acquisition of PatientsLikeMe and Other Patient Data Transactions By Susannah Fox, Jane Sarasohn-Kahn and Lisa Suennen I’ve lived long enough to have learned The closer you get to the fire the more you get burned But that won’t happen to us Cause it’s always been a matter of trust -A […]

Filed Under: health data, news & gossip, patient networks, peer-to-peer health care, policy issues Tagged With: ALS, Jane Sarasohn-Kahn, Lisa Suennen, patientslikeme, Trustworthiness

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Recent Comments

  • Susannah Fox on Public Q&A: “I received scary test results. What questions should I ask my clinician?”: “Thanks, Samantha! I love your signature line/bona fides list — you tick the boxes for “learned and loved experience” described…” May 6, 15:33
  • Samantha Bridge on Public Q&A: “I received scary test results. What questions should I ask my clinician?”: “Great conversation. It has been my experience as a nurse to have the conversation before the testing. What is the…” May 4, 09:05
  • Susannah Fox on Rare Disease in the NYT: “Captivated is such a good description of how I felt, too. I read the essay once through quickly, then a…” Apr 25, 11:12

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