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Susannah Fox

@SusannahFox · Anacaston territory · joined 03 Dec 2008

Author, "Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care" (@MITPress 2024) She/her. SusannahRFox on bluesky &🧵& insta & gmail

37 233Followers
978Following
41 228Posts total
3.8KViews on collected posts

Latest posts

Susannah Fox@SusannahFox
.@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 https://t.co/ATEFJFKUXp https://t.co/2oCig3yQ7n
The internet can be a lifeline for people with rare diseases. How else can those with shared experiences on opposite ends of the world find each other? Researcher Susannah Fox, a former Chief Technology Officer for HHS, has spent decades documenting the evolution of online patient communities. A new survey she conducted offers more detail on rare disease in the U.S. Among the findings: 63% of those with a rare disease in their household used telehealth in the past year (versus 45% of those not in a rare disease home). Half of rare disease respondents went online in the past year to find people with similar concerns, and 38% used AI to learn about a condition or treatment. Fox’s report, out Tuesday, also estimates 15% of U.S. households — some 20 million people — are affected by a rare or undiagnosed illness. Relatedly, Rare Disease Day has been postponed amid chaos at federal agencies. “A punch in the gut for a community that is that is too often dismissed or forgotten," Fox said
1.1K views · 9 likes · 6 reposts · 0 replies Open on X →
Susannah Fox@SusannahFox
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 https://t.co/fBE2gzRTG4 257 views · 1 likes · 1 reposts · 0 replies Open on X →
Susannah Fox@SusannahFox
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. https://t.co/fBE2gzRTG4 https://t.co/8JJcYy4EPq
15% of US adults live in a household affected by rare disease or an undiagnosed illness
Of those, half have gone online to find others with similar health concerns.
Telehealth and use of AI tools for health info are higher among those living in rare/undiagnosed illness households.
A rare disease is one that affects fewer than 200,000 people in the U.S.
416 views · 4 likes · 2 reposts · 1 replies Open on X →
Susannah Fox@SusannahFox
Peer advice from a fed, for other feds: A guide to using Signal for government workers https://t.co/lirUeFnidf 263 views · 0 likes · 1 reposts · 0 replies Open on X →
Susannah Fox@SusannahFox
A consequence of being late to a platform is that my friend Susannah Fox Jr. nabbed our name for her handle, so I have to use my middle initial. I will be forever indebted to her for giving me our domain name https://t.co/aV5eU4vKPd 300 views · 5 likes · 0 reposts · 0 replies Open on X →
Susannah Fox@SusannahFox
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 https://t.co/CMtvPiBskE
A woman stands in front of the US Capitol holding a yellow and blue book titled Rebel Health
1.4K views · 23 likes · 2 reposts · 4 replies Open on X →

Growth & engagement

How the posts we collected actually performed: views and reaction rate post by post, what the audience did with them, and where the follower count goes.

Views per post

1.4K22 Nov
300
2633 Feb
41625 Feb
257
1.1K

Last 6 collected posts, oldest on the left. The scale is logarithmic: one post can outrun the rest a hundred times over.

Engagement rate per post

2.00%22 Nov
1.67%
0.38%3 Feb
1.68%25 Feb
1.56%
1.45%

Reactions — likes, reposts, replies and quotes — divided by views.

What the audience does

Likes66.7%42 in total
Reposts19.0%12 in total
Replies7.9%5 in total
Quotes4.8%3 in total
Bookmarks1.6%1 in total

Share of every reaction we collected for this account. Replies mean argument, reposts mean endorsement, bookmarks mean the post was worth keeping.

The follower curve appears once this account has two daily snapshots — we take one a day, and this one is on its first.

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