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Susannah Fox

I help people navigate health and technology.

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policy issues

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

Update: A Seat at the Table

June 1, 2019 By Susannah Fox 7 Comments

Fortifications at Colonial Willamsburg by Kate Mereand-Sinha

Last November I attended FAREcon, an annual event devoted to food allergy research and education. I published my notes in a long, deep-dive post that included one short section on pending litigation (below). I’m thrilled to report a positive update: “A federal appeals court Friday ruled against the tavern that refused to let the child […]

Filed Under: key people, policy issues Tagged With: disability, food allergy, Rare Disease

Trust gap: Health apps and data sharing

April 29, 2019 By Susannah Fox 21 Comments

Man on a beach blocks camera with his hand

There has been a steady drip-drip-drip of articles documenting how health apps are sharing data with third parties: Data sharing practices of medicines related apps and the mobile ecosystem: traffic, content, and network analysis, by Grundy et al. (British Medical Journal, Feb. 25, 2019) You Give Apps Sensitive Personal Information. Then They Tell Facebook. Wall […]

Filed Under: demographics, health data, policy issues, trends & principles Tagged With: Fda, Health Data, Health Privacy, Hhs, Hipaa, NHS, Trustworthiness

Health Datapalooza X

March 25, 2019 By Susannah Fox Leave a Comment

Lit candles in the shape of the number 10 on top of a pink frosted cupcake

This week is the 10th anniversary Health Datapalooza. It’s a milestone worth celebrating. In 2010, I attended what was then called the Community Health Data Forum at the Institute of Medicine. I posted a preview: Making Health Data Sing (Even If It’s a Familiar Song) and below are my notes from what we knew even […]

Filed Under: health data, key people, medical records, policy issues Tagged With: Alain Rappaport, Alex Fishman, Alex Howard, Alexandra Carmichael, Andrew Wilson, David Hale, Health Data, Health Datapalooza, Kristi Miller Durazo, Palantir, Regina Holliday, Roni Zeiger, Tim O'Reilly, Todd Park

Celebrating innovation as a problem-solving tool in government

February 25, 2019 By Susannah Fox 2 Comments

Empowering Internal Innovators

On January 6, 2017, I published my final post as the Chief Technology Officer of the U.S. Department of Health and Human Services. My intended audience included people I’d never met: the incoming agency leadership. I’d written a memo for the transition team, which greets and orients the new leaders, but I wanted to publish a […]

Filed Under: policy issues Tagged With: Hhs, innovation, open data

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