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Susannah Fox

I help people navigate health and technology.

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research issues

Too legit to quit

April 18, 2022 By Susannah Fox 13 Comments

Sunflowers with a bee

Sara Riggare, PhD, an expert in patient-led research and personal science, tweeted this animated GIF depicting the common process in starting personal science, which is based on Anne Wright’s work: Andrea Downing was among those who replied, writing: “My feedback: We’ve been saying for years what you outline here. The question is: how do we […]

Filed Under: health data, key people, peer-to-peer health care, research issues Tagged With: Andrea Downing, Anne Wright, Dana Lewis, Gary Wolf, Long Covid, personal science, Quantified Self, Sara Riggare, Unrest

LGBTQ+ youth are reaching out for help

March 24, 2021 By Susannah Fox 1 Comment

98% of LGBTQ+ youth have used digital tools for health purposes

In partnership with Vicky Rideout and I, Common Sense Media created fact sheets about multiple groups included in our national study (Latinx, Black, female, LGBTQ+ youth, to name a few) and I thought I’d share each slice of data in a series of posts. The complete survey findings, methodology, quotes from participants, fact sheets, and questionnaire […]

Filed Under: demographics, research issues, social media, trends & principles Tagged With: california healthcare foundation, Common Sense Media, COVID19, HopeLab Foundation, LGBTQ, mental health, Vicky Rideout

Depression, social media use, and digital health

March 22, 2021 By Susannah Fox 9 Comments

Half of those with moderate to severe symptoms of depression have looked online for people with similar health concerns and 75% have used health apps

In partnership with Vicky Rideout and I, Common Sense Media created fact sheets based on our national study and I thought I’d share slices of data in a series of posts. The complete survey findings, methodology, quotes from participants, fact sheets, and questionnaire are available here. Here’s the 10-second summary for this featured group,  young people […]

Filed Under: demographics, research issues, social media, trends & principles Tagged With: california healthcare foundation, Common Sense Media, COVID19, HopeLab Foundation, mental health, Vicky Rideout

LongCovid’s citizen scientists

February 1, 2021 By Susannah Fox 9 Comments

Flock of black birds flying together in a blue sky

Amy Dockser Marcus writes with the sensitivity and precision of a scientist, which is why I was thrilled that she recently turned her attention to the patient-led research being conducted by people with LongCovid, which affects an estimated 10-20% of COVID-19 patients. The Wall Street Journal‘s pay wall may prevent you from reading the full […]

Filed Under: participatory research, peer-to-peer health care, research issues, social media Tagged With: Amy Marcus, Emily Sirotich, Eric Topol, Gina Assaf, Helen Burstin, LongCovid, peer-to-peer healthcare, Wall Street Journal

Patient-led research is a key element of pandemic response

August 14, 2020 By Susannah Fox 11 Comments

Puzzle with missing pieces

On August 12, the Council of Medical Specialty Societies hosted the fifth webinar in their series focused on COVID-19 and clinical registries. If you missed it — or want to watch it again — here’s the video: Here, also, are the panelists’ slides and a collection of tweets posted in advance of and during the […]

Filed Under: health data, participatory research, patient networks, peer-to-peer health care, research issues Tagged With: Body Politic, Council of Medical Specialty Societies, COVID19, Emily Sirotich, Gary Wolf, Gina Assaf, Hannah Davis, Helen Burstin, LongCovid, patient registries, Quantified Self, rheumatoid arthritis

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

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