I've gotten multiple calls lately asking to complete a survey on my political views. none of the companies could identify where my information was going or even where the survey results would have been published. I respectfully declined, but wondering, what would you do? #trust #marketing

Thanks @stanfordhai.bsky.social for including @lightcollective.bsky.social in the #HAIPolicyWorkshop. As co-authors of the #AIRightsInitiative Andrea, Isabel & I were glad to bring the #PatientVoice to discussion. How can we build AI that earns trust, respects autonomy & reflects real lives?

No Aggregation Without Representation isn’t just a motto, it’s a demand for patient voices in AI-driven healthcare. At the recent CA Assemblly hearing on GenAI, I was able to provide testimony for @lightcollective.bsky.social AI must serve people, not just institutions. #NothingAboutUsWithoutUs.

Happy #ClinicalTrialsDay! Today, we celebrate the incredible researchers, participants, and advocates who make medical breakthroughs possible. Every discovery starts with those willing to take a step forward! #Reasons4Research #StandUpForScience #MedicalAdvancement

Mind what you have learned. Save you it can. Yoda #MayThe4th #StarWars #Capcut #Canva #Algenerated

Is anyone else concerned about Palantirs access to the All of Us Research database, especially given the recent contract with ICE? www.axios.com/local/denver...

At the recent #FestivalOfBiologics, I presented on transforming #RareDisease research. I shared how giving patients access & control over their #HealthData can bridge research to clinical care & how tools like #GenomicMapping can lead to new discoveries and personalized treatments. #FutureOfHealth

Over 3,500 people showed up in #SanJose yesterday. Proud to be a part of an amazing community! #WeWillNotBeSilent #ScienceTrumpsAll @50501movement.bsky.social @standupforscience.bsky.social

I went to Catholic School and was raised in a practicing Catholic family. To see Easter even associated with a post like this is appalling to me and should be for anyone who "claims" to be Catholic. This goes against everything I was taught to believe. 😢 Happy Easter... 💜

As part of the Partnership for Quality Measurement (PQM) committees, we need your help to expand our #Patient community. We're now accepting nominations for individuals to join our Pre-Rulemaking Measure Review (PRMR)/Measure Set Review (MSR) and Endorsement & Maintenance (E&M) committees.

Despite having 40+ #diagnoses in my #EMR, I'm still #Undiagnosed. Help us change that, join my case. 🧬🔬 #RareDisease #PatientAdvocacy #Research #CitizenScience #ClinicalTranslation #PersonalizedMedicine #PrecisionMedicine #Genomics rttp.stanford.edu/christine

Joïn us Thursday, April 17th at 9AM PT on @linkedin.com for a conversation about one of the most frustrating challenges in #ClinicalResearch today: If #tech is really so smart, why doesn't it work -and how do we fix it? #ClinicalTrials #ConsuliConversations #OneBurningQuestion

Democratizing data access can unlock breakthroughs, elevate our human potential, and foster accountability, but it is highly dependent on ethical governance and collaboration. check out my latest article and let me know if you agree. What does your vision for the future look like?

I sent this as both an email and posted openly on social media to California Attorney General Rob Bonta regarding his announcement about 23andMe. Still no response... open.substack.com/pub/christin...

Look I have zero excuses for this, but the idea popped into my head and now it's in your head, sorry

Does anyone know if they've re-instated public communication with the #CDC yet? Just got a text message from CVS to get my hepatitis b #vaccine... #Healthcare #patient

Just completed my abstract reviews for AcademyHealth ARM25! In awe of the research being conducted & excited to return as co-lead for the "Individuals living w disability or other complex conditions" track and to share my own experiences as we navigate this new landscape. ➡️ academyhealth.org/ARM

I just shared a link on my social media platforms to follow me here. leave a comment if you're here from it. 💜

Fund patient support groups trying to migrate off Meta. lightcollective.org

#bcsm #medsky #chronicillness #disability

For anyone following me @cvonraesfeld.bsky.social I was locked out of my account, but didn't want to miss the party so here I am. 🎉