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Susannah Fox

I help people navigate health and technology.

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Archives for February 2019

Rare Disease Day 2019

February 28, 2019 By Susannah Fox 3 Comments

Today is Rare Disease Day, when we lift up the stories of the 300 million people who live with more than 6,000 rare conditions. This year’s theme focuses on bridging health and social care, alleviating the heavy burden on people who coordinate medical, social, and support services for themselves and their loved ones. The National […]

Filed Under: patient networks, peer-to-peer health care, research issues Tagged With: Rare Disease

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

Fact sheet: U.S. teens and adults at the intersection of health and technology

February 11, 2019 By Susannah Fox 1 Comment

Group of people in front of huge screen of numbers

In an earlier post I shared the history of the “fact sheets” I maintain about health and technology. I thought I’d share a few highlights from the grandmother of them all — key data points on U.S. teens and adults and their use of technology to pursue health. It is the first one I created when I […]

Filed Under: demographics Tagged With: digital divide, fact sheets, internet access, peer-to-peer healthcare, Pew Internet, social media, teens

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

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Recent Comments

  • Susannah Fox on Patient-led innovation: “Thank you! I’m very happy to know about your work and will add it to the list.” Feb 1, 09:19
  • Andrea Pauls Backman on Patient-led innovation: “Susannah, great list of patient-led organizations and programs, thank you. I would suggest adding a new, award-winning program co-produced by…” Feb 1, 08:58
  • Susannah Fox on Caregiver starter pack: “Thanks, Raj! You capture what I only implied: I wanted to send only what is absolutely necessary for this moment…” Jan 31, 12:38

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