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Susannah Fox

I help people navigate health and technology.

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Rare but not alone

March 11, 2019 By Susannah Fox 1 Comment

Between the flags by Nicolas Alejandro on Flickr

Ashley Eakin, a filmmaker, is being brave and showing her real self online. She does it on behalf of the kids who share her rare condition so they can see themselves, in her image — a beautiful example of how the internet can be a bridge to hope and inclusion. Watch: When she mentions in […]

Filed Under: beauty and wonder, peer-to-peer health care Tagged With: Ashley Eakin, Burt Minow, Moebius Syndrome, peer-to-peer healthcare, Rare Disease, rare diseases

Building the evidence base for peer health advice

March 4, 2019 By Susannah Fox 7 Comments

Stone carving of a hand holding old fashioned scales

Imagine an intervention that produces results like these: One-third of those living with chronic conditions are now more likely to take necessary medications. The risk of admission to a neonatal ICU during first year of life reduced by 63%. People with with poorly-controlled diabetes were able to achieve a 1.1-point reduction in their HbA1c. Each […]

Filed Under: peer-to-peer health care, positive patterns Tagged With: Centering Healthcare Institute, Centering Pregnancy, Chronic Conditions, diabetes, flip teaching, patientslikeme, peer-to-peer healthcare, Society of Behavioral Medicine

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

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Recent Comments

  • Susannah Fox on Rare Disease in the NYT: “Liz, thank you for sharing this comment! I’m sorry for your loss and the experience you went through. Thank you…” Jul 4, 12:05
  • Liz on Rare Disease in the NYT: “The author’s willingness to grapple with her competing instincts is admirable. As a former “medical mom,” I found the peer-connection…” Jul 1, 21:46
  • Carrie Kimmell on Case study: Trevor’s disease: “Hi Jill – currently Brandon is walking without a limp (he is almost 15 now). He was going to undergo…” Jun 5, 14:07

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