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Susannah Fox

I help people navigate health and technology.

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Regina Holliday

Leveraging data-driven patient participation to accelerate medical research

May 18, 2020 By Susannah Fox 9 Comments

A person holds a sign "I did not get the memo that this was impossible" as 1s and 0s race beneath him

Here’s a lesson I learn over and over again: Never assume knowledge. Don’t waste your time making a point if you are not sure your audience understands the context for it. Or, as the wise Andy Kohut used to say, “If they don’t get the premise, they won’t get the joke.” Last year I spoke […]

Filed Under: health data, medical records, research issues Tagged With: All of Us, Andy Kohut, Christine Bechtel, FasterCures, Milken Institute, patientslikeme, Rachel Tunis, Regina Holliday, Tidepool, Todd Park, War on Cancer

Health Datapalooza X

March 25, 2019 By Susannah Fox Leave a Comment

Lit candles in the shape of the number 10 on top of a pink frosted cupcake

This week is the 10th anniversary Health Datapalooza. It’s a milestone worth celebrating. In 2010, I attended what was then called the Community Health Data Forum at the Institute of Medicine. I posted a preview: Making Health Data Sing (Even If It’s a Familiar Song) and below are my notes from what we knew even […]

Filed Under: health data, key people, medical records, policy issues Tagged With: Alain Rappaport, Alex Fishman, Alex Howard, Alexandra Carmichael, Andrew Wilson, David Hale, Health Data, Health Datapalooza, Kristi Miller Durazo, Palantir, Regina Holliday, Roni Zeiger, Tim O'Reilly, Todd Park

Artists of health care

September 4, 2018 By Susannah Fox 39 Comments

Naked Barbie doll with six sets of pliers clamped to her left leg

I have found that we can anticipate the future by paying attention to artists. Like hackers, artists bend tools until they break and ask, “Why CAN’T I do that?” They push the edges of any field they find themselves in. Autodesk, which makes software for people who make things, created the Pier 9 Residency Program to […]

Filed Under: beauty and wonder Tagged With: Anatomical Element, Anthony Carbajal, art, Autodesk, Doug Lindsay, Elizabeth Jameson, Gilles Frydman, Jennifer Berry, Maggie Whittum, Regina Holliday, Spoon Theory, Stanford Medicine X, Yoko Sen

This Thanksgiving, engage with grace

November 20, 2017 By Susannah Fox 2 Comments

The following is a repost from 2012, one of the first examples of what would become my “featured commenters” series: I want to continue the Engage with Grace blog rally by highlighting my favorite comment thread about it, from a 2010 post on e-patients.net. For me, this is what blogging is about — providing a […]

Filed Under: end of life, featured commenters Tagged With: Brian Ahier, Bryan Vartabedian, Carol Torgan, Engage with Grace, Eve Harris, Regina Holliday, Ted Eytan, Wendy Sue Swanson

Why people participate in clinical trials: altruism and access

October 30, 2017 By Susannah Fox 3 Comments

Painting of a red landscape with people climbing a dark arrow toward the sky

I’m honoring the contributions of my community colleagues over the years by pulling out some of their best comments and quotes.  Rahlyn Gossen, in response to Peer-to-peer healthcare: Crazy, crazy, crazy, obvious (2011):  By far the biggest hurdle to clinical trials recruitment is awareness. The public is generally not aware and doctors are not informing […]

Filed Under: featured commenters Tagged With: altruism, Clinical Trial Data, Clinical Trials, EHR, Regina Holliday

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

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  • Kevin Lawrence on Caregiver starter pack: “We recently read The End-of-Life Handbook in our book club on Smart Patients. It’s aimed at caregivers rather than patients…” Feb 2, 09:41
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