Patient communities have directly benefitted from this investigative journalism - and this work is saving lives.

This is so well deserved. Thank you Casey Ross, Bob Herman and the STAT team!

#BeLikeLight

Patient communities have directly benefitted from this investigative journalism - and this work is saving lives.

This is so well deserved. Thank you Casey Ross, Bob Herman and the STAT team!

#BeLikeLight

How about putting one on patient delegates name badges too? All patient advocates stand to benefit from taking a leaf out of the Mighty Casey's approach to getting people to 'listen up' to what matters to patients.

Tradeoffs We were honored to join this dialogue! TY to our co-authors who made this project possible:

Liz Salmi Ysabel Duron Dave deBronkart YogaQueenV Jill Holdren Dana M. Lewis | #OpenAPS 🤖 Marlena GRASP Project Life Christine Von Raesfeld 𝗖𝗵𝗲𝘁𝗵𝗮𝗻 𝗦𝗮𝗿𝗮𝗯𝘂, MD Enlightening Results 💡

lightcollective.org/patient-ai-rig…

Though it was initially a struggle to get patients a seat at the table, Andrea says more regulators and industry groups are now reaching out, including the National Academy of Medicine.

Listen or read for more on patients' AI rights ⬇️ tradeoffs.org/2024/05/02/ai-…

There is significant research already on good ways health systems, academics and tech companies can partner with patients; Andrea hopes that model can be applied to artificial intelligence, too.

Patients don’t just “want” a seat at the table-the deserve one. AI will be stronger for it and the whole medical establishment will benefit!

This week, we talk with Andrea Downing (@bravebosom) President and Co-Founder of The Light Collective ☀️, a patient advocacy group whose mission is to incorporate patients’ perspectives into the development of health care AI.

Here are some key takeaways from our conversation: a thread 🧵

On building an AI system for rare disease drug development, Wade Shen/ARPA-H said at #SDDS2024 : One of the core challenges with rare diseases, especially when we think about how they impact the kinds of AI technologies that we try to use with them, is the fact that there's no…

Federal policymakers are scrambling to write rules of the road that they hope will keep AI from causing more harm than good.

But often missing from these discussions with researchers and industry leaders are the ones whose care hangs in the balance: patients.

We are calling to establish rights for patients by patients as AI policies in healthcare are shaped.

Thank you Tradeoffs for having me!
#BeLikeLight

When Andrea speaks, everyone should definitely listen! #Healthcare #BeLikeLight

This week, why Andrea Downing and The Light Collective ☀️ want a seat at the AI table for patients.

tradeoffs.org/2024/05/02/ai-…

New podcast episode: Policymakers are scrambling to write road rules to keep #AI from causing more harm than good. But patients are often left out of discussions. Tune in to Tradeoffs with The Light Collective ☀️ on why patients should get a seat at the AI table:
tradeoffs.org/2024/05/02/ai-…

We are calling to establish rights for patients by patients as AI policies in healthcare are shaped.

Thank you Tradeoffs for having me!
#BeLikeLight

HIPAA is out of date and needs a massive overhaul for privacy and security.

This is unacceptable.

👀

This just in...FTC Strengthens Health Data Breach Notification Rule - with stronger protections for consumers.

.... and The Light Collective ☀️ was cited 6 times. 🤘

#BeLikeLight

hitconsultant.net/2024/04/29/ftc…

.Cybersecurity and Infrastructure Security Agency unveils guidelines for AI and critical infrastructure. hubs.li/Q02vkvm80 via reb heilweil