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Susannah Fox

I help people navigate health and technology.

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research issues

A deep dive into food allergy research and education

November 8, 2018 By Susannah Fox 21 Comments

Cartoon: One woman says, "Food allergies are all in your head." Other woman replies, "No, in my head I'm punching you in the face."

Longtime followers of this blog know I believe in the power of peers, particularly among people living with rare conditions, and may also know that I am a food-allergy mom. This past weekend I had the chance to attend the annual conference for my rare community, FAREcon, and drink from the peer advice well. Warning: This […]

Filed Under: patient networks, peer-to-peer health care, research issues Tagged With: food allergy, Rare Disease

Clinical trials jump on the Cluetrain

June 22, 2018 By Susannah Fox 6 Comments

Man rushes toward a modern train

When the organizers of a National Cancer Institute workshop on social media and clinical trials invited me to speak, they said: We have an ethical obligation to understand social media. Social media is not just trendy. It’s a tool, an opportunity to act in an ethical way, not only to increase recruitment but to help […]

Filed Under: research issues, social media, trends & principles Tagged With: Cluetrain Manifesto, national cancer institute, Pew Internet, Pew Research Center, social media

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

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

Disconnectedness kills, connectedness heals

March 23, 2015 By Susannah Fox 4 Comments

If you crave inspiration, tune in to the Robert Wood Johnson’s Pioneering Ideas podcast by subscribing to the iTunes feed or listening on Soundcloud: https://soundcloud.com/rwjf-podcasts/final-cut-episode-8/s-q4foj

Filed Under: key people, research issues, trends & principles Tagged With: #RWJFpodcast, Robert Wood Johnson Foundation

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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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