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Susannah Fox

I help people navigate health and technology.

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Hipaa

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

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

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

A New Conversation About Health Privacy: Who’s In?

May 21, 2010 By Susannah Fox 29 Comments

Light bulbs in the night sky - a photo by Ted Eytan

Facebook has sparked a new debate about privacy and I think it’s time to bring it to health care. What does it mean when millions of people flock to share/overshare information, even as Facebook’s default privacy settings have slowly become openness settings (but the company maintains radio silence)? Pew Internet research shows that a sizeable […]

Filed Under: health data, patient networks, policy issues Tagged With: Facebook, Hipaa, patientslikeme, Pew Internet, privacy

The Decision Tree: How Better Health Can Scale

May 1, 2010 By Susannah Fox 3 Comments

“The internet was created to connect people and groups. The first step is to share stories. The next step is to share quantitative observations.” “Health care has been locked up in regulatory amber. HIPAA was passed in 1996, almost perfectly timed to cut off health care from the internet. But there is a loophole: to […]

Filed Under: health data, patient networks, policy issues, positive patterns Tagged With: 23andme, chronic disease, CureTogether, Decision Tree, digital divide, Genetics, getupandmove, Health Data, Hipaa, patientslikeme, Pew Research Center, susannah fox, Thomas Goetz

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