Susannah Fox

If you are looking for blue skies, you won’t find them in DC these days, but you will find me on bluesky as SusannahRFox

@patrickc Another example of Reddit supplying "good enough" info: emj.bmj.com/content/41/2/1… (since it's paywalled, here's my write-up: linkedin.com/pulse/wow-how-…

Observing some people close to me with chronic health conditions, it's striking how useful Reddit frequently ends up being. I think a core reason is because trials aren’t run for a lot of things, and Reddit provides a kind of emergent intelligence that sits between that which any single physician can marshal and the full rigor of clinical trials. Why aren’t trials run for a lot of things? Well, they’re of course slow and expensive (median cost of $19M for a pivotal trial in 2015[1]; after adjusting for inflation and other phases, maybe that corresponds to a total of $40M today?). But they’re also hard to fund when the intervention in question lacks IP protection since the ensuing knowledge can’t be monetized. As such, trials for diet, over-the-counter supplements, and lifestyle interventions are under-pursued. To give one prosaic example, lots of people think that magnesium improves sleep, but, as far as I know, no trial has ever been run assessing its ability to improve sleep in non-elderly adults without sleep disorders. So, Reddit — in a pretty unstructured way — makes a limited kind of “compounding knowledge” possible. Best practices can be noticed and can imperfectly start to accumulate. For people with chronic health problems, this is a big deal, and I’ve heard lots of stories between “I found something that made my condition much more manageable” all the way to “I found a permanent cure in a weird comment buried deep in a thread”. (Of course, one also sees this outside of medical conditions. I’ve enjoyed the recommended routine in the BodyWeightFitness subreddit, as a comparable kind of distilled practical wisdom[2].) An interesting and somewhat more formalized example of this approach was recently used for long COVID and published earlier this year[3]. After surveying 3,900 individuals, the paper analyzes patient-reported outcomes for 150 different treatments, yielding the figure reproduced below. There are evidently no silver bullets, but it is striking that, say, about half of people find that antihistamines are helpful. I know a number of people who found the learnings from this study to be impactful in improving their daily quality-of-life. Seeing this paper and the Reddit experience makes me wonder whether the approach could somehow be scaled: is there a kind of observational, self-reported clinical trial that could sit between Reddit and these manual approaches? Should there be a platform that covers all major chronic conditions, administers ongoing surveys, and tracks longitudinal outcomes? I don’t really know what the best way to go about this would be, but it feels to me that there could be something important here. There’s a lot of latent data in patients’ subjective experiences that is not today being properly gathered or analyzed.

@patrickc Reddit shines when people need quick answers to questions they may not want to ask publicly, like STDs. And it turns out the info they get is quite good: #google_vignette" target="_blank" rel="nofollow noopener">jamanetwork.com/journals/jama/…

@patrickc Yes! I wrote a field guide to the patient-led revolution in medical care as a way to shine a spotlight on this #PeerHealthAdvice -> scientific progress phenomenon: mitpress.mit.edu/9780262048897/…

Check out my favorite #historicalnovels about ordinary people overcoming extraordinary obstacles via @Shepherd_books. #histnov #fiction #justread #inspiration #motivationMonday shepherd.com/best-books/ord…

Vaccines have granted families in wealthy countries the luxury of forgetting what measles, polio, rubella, and other preventable diseases are like. We're looking at how many millions of lives vaccines have saved. Read the full story: nature.com/articles/d4158…

63% of adults living in #raredisease households have, in the past year, seen a doctor or other health care provider, online or via a telehealth appointment. Study conducted by SSRS for @SusannahFox, @ArchangelsMe & Association on Aging in NY. eurekalert.org/news-releases/…

📢#RareDisease is NOT rare. 📢New national survey finds 8% of U.S. households are directly affected by rare disease. SSRS is proud to work w/ @SusannahFox , @ArchangelsMe & the Association on Aging in NY on this study: ssrs.com/insights/rare-… #RareDiseaseDay2025

.@NIH + @US_FDA canceling their #RareDiseaseDay event was a punch in the gut for a community that is too often dismissed or forgotten. Thanks to @isabellacueto for sharing our new research & my disappointment statnews.com/2025/02/25/uni…

50% of people living in a #RareDisease household have, in the past year, gone online to find other people who might have health concerns similar to their own. Of those, 8 in 10 were successful in finding #PeerHealthAdvice ssrs.com/insights/rare-…

View the findings from the first probability-based national survey to measure the #raredisease population. SSRS is proud to work w/@SusannahFox , @ArchangelsMe & The Association on Aging in New York to bring awareness to this important research: ssrs.com/insights/rare-…

This is the first probability-based national survey measuring the rare disease and undiagnosed illness population. Grateful to @ssrs_research + @ArchangelsMe + Association on Aging in New York for their partnership.

NEW SURVEY: 15% of U.S. households are affected by rare disease or an undiagnosed illness. Their lives are characterized by extreme stress, often matched by their resourcefulness. ssrs.com/insights/rare-…

Peer advice from a fed, for other feds: A guide to using Signal for government workers a.wholelottanothing.org/a-guide-to-usi…

@chrissyfarr Late to this thread but for future reference: Shannon Lantzy shannonlantzy.com

Any female health & cybersecurity experts who would talk to me for a piece for Second Opinion? So far, I’ve been referred only men.

@PearlF @BreakthroughT1D @BeyondType1 Thank you! She’s all set!!

UPDATE: Thanks to the diabetes community for coming through. Brianna is on her way to pick up a cartridge and has two back-up contacts if that falls through (including one person who works for Tandem)

Long shot request for help: my friend Brianna is visiting Boston and forgot her Tandem mobi pump cartridges at home. No one can ship before Monday afternoon. Is there anyone anywhere in driving distance she can get one from today? #WeAreNotWaiting #DOC

@abrewi3010 She's all set! A whirlwind of generosity. Head spinning from all the nice messages I got offering to help.

@SusannahFox That great to hear!!! Hope everything works out.

Can anyone help?

@takmad 🥰

@SusannahFox youtu.be/SI4ZTXOi6Ew

If you are looking for blue skies, you won’t find them in DC these days, but you will find me on bluesky as SusannahRFox