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Susannah Fox

I help people navigate health and technology.

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health data

Why should anyone care about health data interoperability?

September 16, 2019 By Susannah Fox 6 Comments

Medical records closes at 5pm on Friday by Regina Holliday

A question I hear quite often, sometimes whispered, is: Why should anyone care about health data interoperability? It sounds pretty technical and boring. If I’m talking with a “civilian” (in my world, someone not obsessed with health care and technology) I point out that interoperable health data can help people care for themselves and their families […]

Filed Under: health data Tagged With: Amazon, Clinical Trial Data, FHIR, Health Data Rights, 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

Mapping the health data landscape

June 17, 2019 By Susannah Fox 18 Comments

1490 map of the world by Henricus Marcellus shows great detail for Europe but only a rough idea of Africa and Asia

I think our understanding of the current health data landscape is about as accurate as a map of the world in the 15th century:  excruciatingly detailed in the areas we know well, but hilariously, woefully — even dangerously — incomplete when it comes to the areas of health and health care that lie beyond our […]

Filed Under: health data Tagged With: Cambia Health Solutions, electronic medical record, Health Data, Sara Riggare

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

Art and data

April 1, 2019 By Susannah Fox Leave a Comment

Jacqueline von Edelberg created a striking installation on the lawn of the U.S. Capitol on Monday, March 25. Each strip of cloth represents one child killed by a gun in the U.S. since the Sandy Hook massacre in 2012, 13,000 in all. The installation served as a backdrop for a rally commemorating the one year […]

Filed Under: beauty and wonder, health data Tagged With: art, gun violence, Health Data, Robert Wood Johnson Foundation

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

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  • barbara figge fox on Jean Nidetch, Rebel Health leader: “Jean Neditch helped so many of us! She changed the landscape for weight reduction by leveraging peer support.” May 9, 08:11
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