• 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

participatory research

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

How to make 10 million discoveries

January 11, 2020 By Susannah Fox Leave a Comment

Wave Group Photo by Michael Cannon on Flickr

When people’s questions go unanswered, they don’t stop asking them. They turn to Dr. Google and other sources. They try to solve their own mysteries, using whatever they can find. This is an opportunity that some people misread as dangerous or wrong. How might we help more people contribute to discovery of new treatments or […]

Filed Under: key people, participatory research, research issues Tagged With: Gary Wolf, Quantified Self

The Rise of the New Bio-citizen

March 11, 2018 By Susannah Fox 4 Comments

Over the next two days, I’ll be part of a group convened by Eleonore Pauwels and Todd Kuiken to discuss barriers to citizen-driven biomedical research. If you are intrigued, read the report, “The Rise of the New Bio-citizen,” which lays out how people “are pursuing a range of activities from analyses of genomic data for […]

Filed Under: participatory research, peer-to-peer health care, policy issues, research issues Tagged With: Anna McCollister-Slipp, Eleonore Pauwels, Invent Health, Matt Might, patient activation, peer-to-peer healthcare, Rare Disease, Todd Kuiken, Tracking for Health

Access to results that matter

October 26, 2017 By Susannah Fox 16 Comments

Painting of people climbing cell structures

The Patient-Centered Outcomes Research Institute (PCORI) will kick off their annual meeting on Tuesday, October 31. I will moderate the first panel, “Access to Results That Matter,” and, as I like to do, I’m starting the conversation early online. Here’s the session description: Traditional health research often does not provide the answers to patients’ questions […]

Filed Under: health data, participatory research, policy issues, research issues Tagged With: Ben Goldacre, Bishop Simon Gordon, David Lansky, Diane Padden, flip teaching, Freddie White-Johnson, PCORI, Regina Holliday, Sharon Terry, Stephanie Buxhoeveden

“His doctors were stumped. Then he took over.”

February 5, 2017 By Susannah Fox Leave a Comment

New York Times Sunday Business story on Feb. 5, 2017: Doctor, Cure Thyself

How might we empower people to participate in research about their own diseases or conditions? Which models work best for organizations solving medical mysteries or improving care for those living with rare conditions? These are two of the questions raised by a New York Times story today: “His doctors were stumped. Then he took over,” by Katie Thomas […]

Filed Under: hc's problem list, key people, participatory research, patient networks, peer-to-peer health care Tagged With: C3N Project, David Fajgenbaum, patientslikeme, peer-to-peer healthcare, Rare Disease, Smart Patients

Quantified Self Public Health

May 12, 2015 By Susannah Fox 11 Comments

Quantified Self Public Health is back! 150+ health geeks of many stripes will gather on Thursday, May 14, in San Diego to discuss how access to personal data could benefit individuals and society. It is an invite-only meeting (sorry!) but filled with voracious documentarians like Joyce Lee (read her Storify from last year) and, well, me (read […]

Filed Under: key people, participatory research, research issues Tagged With: Don Norman, home health care hacks, Ian Eslick, maker movement, public service, QSPH, Quantified Self

  • « Go to Previous Page
  • Go to page 1
  • Go to page 2
  • Go to page 3
  • Go to page 4
  • Go to page 5
  • 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 Patient Input on Clinical Trials: “Great question, thank you! My impression is that our best bet is to make it appeal to study sponsors as…” Oct 17, 10:26
  • Dave deBronkart on Patient Input on Clinical Trials: “I don’t have anything to add but I have a suggestion for the problem that trialists don’t *know* about the…” Oct 16, 14:01
  • Rufus on Hack needed: Tiny pills, trembling hands: “How about using a small piece of store bought bread? Slices of bread can be “smooshed,” and a small piece…” Oct 5, 23:48

Copyright Susannah Fox © 2025 · WordPress · Log in