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Susannah Fox

I help people navigate health and technology.

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health data

Why I (finally) signed up for health data access

January 17, 2020 By Susannah Fox 8 Comments

Peas and pods on cutting board

Christine Bechtel, Lygeia Ricciardi, Dave deBronkart, Casey Quinlan, and Donna Cryer published an article in Health Affairs this week: “Why Aren’t More Patients Electronically Accessing Their Medical Records (Yet)?” Please click through and read it — it’s open access.  Being a health geek, I read footnotes and every link in this article is worth your time. Bechtel […]

Filed Under: health data, medical records, peer-to-peer health care Tagged With: Casey Quinlan, Christine Bechtel, Courtney Lyles, Donna Cryer, E-Patient Dave, food allergy, Health Affairs, Julia Adler-Milstein, Lygeia Ricciardi, Sunny Lin, Urmimala Sarkar

What’s your advice?

November 12, 2019 By Susannah Fox 19 Comments

Arrows connect Give and Take; a bracket shows that Care encompasses both.

My dad was a survivor — of a heart attack in his 50s, kidney cancer in his 60s, and an initial diagnosis of melanoma in his 70s. Melanoma recurrence and complications of treatment are what finally got him. A lifelong runner, Dad kept meticulous notes about his mileage and heart rate on paper. He bought […]

Filed Under: health data, peer-to-peer health care Tagged With: cancer, caregivers, family, Tracking for Health

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

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

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