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Susannah Fox

I help people navigate health and technology.

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23andme

Tracking the trackers

May 13, 2020 By Susannah Fox 25 Comments

In Dark Times Shine Your Light Brighter

UPDATE: On August 12, I’ll moderate a discussion about prioritizing patient engagement and inclusion of patient-generated COVID-19 data in clinical registries. It is being offered free and open to the public. Read a preview post and register here for the webinar. Every day I see a new example of a survey or other tool to […]

Filed Under: health data, participatory research, patient networks, peer-to-peer health care, research issues Tagged With: 23andme, Ancestry, Body Politic, COVID19, cystic fibrosis, Health Data, Open Humans Foundation, patient registries, patientslikeme, Webmd

A genomic literacy spiral?

December 16, 2013 By Susannah Fox 6 Comments

Like many people, I’m intrigued by the 23andme drama. Here’s a quote I scribbled down at Health Foo: The data and genomics revolution is akin to the print revolution. Hundreds of years ago, peasants looked at this converted wine press and asked why we need more Bibles when nobody can read. The printing press triggered a […]

Filed Under: key people, policy issues Tagged With: 23andme, genomics, Health Foo

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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Recent Comments

  • Susannah Fox on The Promise of Patient-Led Research Integration: “Thank you, Lorraine! I will check back on the June meeting to see how the agenda is built out. I’m…” May 9, 17:59
  • Lorraine Johnson on The Promise of Patient-Led Research Integration: “This is a timely topic Susannah! I am serving on the planning committee of The National Academies for a workshop…” May 7, 18:52
  • Susannah Fox on A survey about clinical trial support groups: “Hi Diane, here is one article I found about Tirzepatide — a drug that’s in the headlines these days since…” Mar 9, 10:37

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