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Susannah Fox

I help people navigate health and technology.

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health data

Public Q&A: Patient registries

March 9, 2020 By Susannah Fox 17 Comments

A community colleague asked for advice about how an organization can boost the signal for their patient registry. Recruitment levels are not what they expected and nowhere near what they need. I’m sharing what I wrote back so that others can chime in with their advice in the comments. First, look at what successful registries […]

Filed Under: health data, patient networks, public Q&A, research issues Tagged With: All of Us, cystic fibrosis, Erin Moore, ImproveCareNow, John Wilbanks, NIH, patient registries, Quality Improvement

Chasing cures

February 3, 2020 By Susannah Fox 10 Comments

Decorative: blue gossamer

Bon Ku, MD, a regular on the TV show “Chasing the Cure,” and David Fajgenbaum, MD, MBA, author of CHASING MY CURE, invited me to join their upcoming panel at the Health Datapalooza. Guess what title we chose? We are nothing if not consistent: Chasing cures. We intend to focus on how open source principles can break […]

Filed Under: health data, Networkers, patient networks, peer-to-peer health care, policy issues, Seekers Tagged With: flip teaching, Health Datapalooza, Rare Disease, rare diseases

How might we push power out to the edges of the network?

January 24, 2020 By Susannah Fox Leave a Comment

Oak tree leaves budding

Cambia Health Solutions’ podcast, HealthChangers, invited me to share a few lessons learned, both personally and professionally. Listen in or read the transcript (below): Leslie Constans: One of the things I wanted to kick off our conversation with was finding out a little bit about this idea of working at the intersection of health and technology […]

Filed Under: health data, public Q&A Tagged With: Cambia Health Solutions, caregivers, HopeLab Foundation, Pew Internet, Pew Research Center, Well Being Trust

Why I (finally) signed up for health data access

January 17, 2020 By Susannah Fox 8 Comments

Peas and pods on cutting board

Christine Bechtel, Lygeia Ricciardi, Dave deBronkart, Casey Quinlan, and Donna Cryer published an article in Health Affairs this week: “Why Aren’t More Patients Electronically Accessing Their Medical Records (Yet)?” Please click through and read it — it’s open access.  Being a health geek, I read footnotes and every link in this article is worth your time. Bechtel […]

Filed Under: health data, medical records, peer-to-peer health care Tagged With: Casey Quinlan, Christine Bechtel, Courtney Lyles, Donna Cryer, E-Patient Dave, food allergy, Health Affairs, Julia Adler-Milstein, Lygeia Ricciardi, Sunny Lin, Urmimala Sarkar

What’s your advice?

November 12, 2019 By Susannah Fox 19 Comments

Arrows connect Give and Take; a bracket shows that Care encompasses both.

My dad was a survivor — of a heart attack in his 50s, kidney cancer in his 60s, and an initial diagnosis of melanoma in his 70s. Melanoma recurrence and complications of treatment are what finally got him. A lifelong runner, Dad kept meticulous notes about his mileage and heart rate on paper. He bought […]

Filed Under: health data, peer-to-peer health care Tagged With: cancer, caregivers, family, Tracking for Health

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

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Recent Comments

  • Susannah Fox on Public Q&A: “I received scary test results. What questions should I ask my clinician?”: “Thanks, Samantha! I love your signature line/bona fides list — you tick the boxes for “learned and loved experience” described…” May 6, 15:33
  • Samantha Bridge on Public Q&A: “I received scary test results. What questions should I ask my clinician?”: “Great conversation. It has been my experience as a nurse to have the conversation before the testing. What is the…” May 4, 09:05
  • Susannah Fox on Rare Disease in the NYT: “Captivated is such a good description of how I felt, too. I read the essay once through quickly, then a…” Apr 25, 11:12

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