• Skip to primary navigation
  • Skip to main content
  • Skip to footer

Susannah Fox

I help people navigate health and technology.

  • Home
  • Rebel Health
  • Blog
    • greatest hits
    • health data
    • peer-to-peer health care
    • public Q&A
  • About me
    • Bio
    • Now
    • Curriculum vitae
  • Events

Health Data

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

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

Mapping the health data landscape

June 17, 2019 By Susannah Fox 18 Comments

1490 map of the world by Henricus Marcellus shows great detail for Europe but only a rough idea of Africa and Asia

I think our understanding of the current health data landscape is about as accurate as a map of the world in the 15th century:  excruciatingly detailed in the areas we know well, but hilariously, woefully — even dangerously — incomplete when it comes to the areas of health and health care that lie beyond our […]

Filed Under: health data Tagged With: Cambia Health Solutions, electronic medical record, Health Data, Sara Riggare

“Human stories really are what drive us…”

May 22, 2019 By Susannah Fox 2 Comments

Stanford Medicine X stage

The more we open access to the data, information, and tools people need to solve their own problems, the better. That’s the essential message of the research and consulting I’m engaged in these days, helping leaders to see the opportunities that spring, for example, from tapping into the zeitgeist of social platforms and new data […]

Filed Under: key people, peer-to-peer health care, positive patterns Tagged With: #wearenotwaiting, Dana Lewis, diabetes, Health Data, HopeLab Foundation, OpenAPS, teens, Vicky Rideout, Well Being Trust

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

Art and data

April 1, 2019 By Susannah Fox Leave a Comment

Jacqueline von Edelberg created a striking installation on the lawn of the U.S. Capitol on Monday, March 25. Each strip of cloth represents one child killed by a gun in the U.S. since the Sandy Hook massacre in 2012, 13,000 in all. The installation served as a backdrop for a rally commemorating the one year […]

Filed Under: beauty and wonder, health data Tagged With: art, gun violence, Health Data, Robert Wood Johnson Foundation

  • Go to page 1
  • Go to page 2
  • Go to page 3
  • Go to page 4
  • Go to Next Page »

Footer

Explore

Don't miss a post

Enter your email address and receive notifications of new posts by email.

Topics

  • Seekers
  • Networkers
  • Solvers
  • Champions
  • Health Data
  • Peer-to-Peer Health Care
  • Public Q&A

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

Copyright Susannah Fox © 2025 · WordPress · Log in