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Susannah Fox

I help people navigate health and technology.

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health data

A taxonomy of health data

February 4, 2019 By Susannah Fox 36 Comments

Red and green M&M candies both mixed and sorted by color

How do you define “health data”? To borrow a phrase from Daniel Solove, it is a concept in disarray and in need of a taxonomy. Here are the items that fall naturally into the health data basket: electronic health record data current or past health and disability status, including mental and physical well-being medication lists […]

Filed Under: health data, internet geology, policy issues Tagged With: Daniel Solove, Health Data, Hipaa

The P stands for portability

January 18, 2019 By Susannah Fox Leave a Comment

Image of a sound board with the words "a16z podcast"

One of my core beliefs is that we need to open up access to the data, information, and tools people need to solve their own problems in health care — or at least give people the chance to direct their data to experts who can help them. I recently had the chance to be part […]

Filed Under: hc's problem list, health data, key people, medical records, policy issues Tagged With: Andreessen Horowitz, Anil Sethi, Ciitizen, Hipaa, podcasts, Sonal Chokshi, Vijay Pande

Data as an engine of disruption in health care

October 22, 2018 By Susannah Fox 32 Comments

Medical records closes at 5pm on Friday by Regina Holliday

Continuing my practice of “flipping” an event — posting what I hope to get across in advance in order to jump start the conversation — here is a preview for a panel set to take place on Oct. 23. My co-panelists (Iya Khalil, Deborah Kilpatrick, and Don Rucker) and I will talk about data as an engine […]

Filed Under: health data, medical records, policy issues Tagged With: Anil Sethi, Blue Button, Deborah Kilpatrick, Deven McGraw, Don Rucker, EHR, electronic medical record, FasterCures, flip teaching, Harlan Krumholz, Hugo Campos, Iya Khalil, Lisa Bari, Lucia Savage, Milken Institute, Open Notes

Blue Button’s North Star

August 23, 2018 By Susannah Fox Leave a Comment

Red Stop sign with stickers, so it reads: DON'T STOP BELIEVING

Blue Button is a Trojan horse for culture change in the American health care system. It places power in the hands of patients and whets the data appetites of millions of Americans and the companies who would like to serve them. If you’ve never heard of Blue Button, here’s a quick overview: The federal government […]

Filed Under: health data, medical records, policy issues, positive patterns Tagged With: Blue Button, FHIR, Hhs, Mark Scrimshire, Markle Foundation, Medicare, VA, veterans, White House

Access to results that matter

October 26, 2017 By Susannah Fox 16 Comments

Painting of people climbing cell structures

The Patient-Centered Outcomes Research Institute (PCORI) will kick off their annual meeting on Tuesday, October 31. I will moderate the first panel, “Access to Results That Matter,” and, as I like to do, I’m starting the conversation early online. Here’s the session description: Traditional health research often does not provide the answers to patients’ questions […]

Filed Under: health data, participatory research, policy issues, research issues Tagged With: Ben Goldacre, Bishop Simon Gordon, David Lansky, Diane Padden, flip teaching, Freddie White-Johnson, PCORI, Regina Holliday, Sharon Terry, Stephanie Buxhoeveden

Access to data = access to power

October 19, 2017 By Susannah Fox 17 Comments

Black Lives Matter sign

Data about your health and that of your community can empower you to make — or demand — changes. When there are gaps in the record or the data don’t exist, participatory data collection empowers people to contribute to the public conversation. Access to data is access to power. On November 17-19, 2017, Data for […]

Filed Under: health data, policy issues, trends & principles Tagged With: Adverse Childhood Experience, asthma, Black Lives Matter, Blue Button, FHIR, flip teaching, Health Data, health disparities

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