Christine Von Raesfeld, Patient Advocate

08/26/2025

🌟 Know a high school or college student who’s curious about AI, digital ethics, and patient rights?

✨ Shine the Light is a new Student Ambassador program from lightcollective.org; created by students, for students. It’s a space for bold voices to lead real conversations about tech and humanity.

What’s inside:
🧠 Monthly webinars w/ guest speakers
💬 Private Discord + weekly prompts
🎯 Mentorship to build your own advocacy project
🌍 Collab on a collective campaign

📅 Applications close Sept 1
👉 Apply: [use QR code or paste: https://lightcollective.typeform.com/ShineALight]

Tag someone who should be part of this. Let’s help the next generation shine.

YouthAdvocacy

08/08/2025

Later today at DEF CON, Andrea Downing will take the stage, and trust me, you don’t want to miss what she has to say.

In a world where technology is evolving faster than ethics can be reviewed, her voice is one of the few cutting through the noise with clarity, courage, and lived experience. With the introduction of models like , the stakes around our data, consent, and digital agency have never been higher.

At The Light Collective, we’ve been sounding the alarm, and building the bridge for a future where patient communities aren’t just protected, but empowered.

If you’re at , come find us. If you’re watching from afar, pay attention. The conversation is shifting, and we’re making sure it moves toward dignity, transparency, and collective action.

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07/21/2025

Interested to hear more about why the 23andMe bankruptcy hearing matters? Be sure to follow The Global Biodata Trust for info and insights!

06/22/2025

My last post on LinkedIn has garnered a lot of attention —38 reposts, 250+ reactions, and one very clear message:

Patient advocates are still being asked to work for free, even in rooms where everyone else is paid.

We show up with lived experience, systems insight, and hard-earned expertise—and too often, we’re the only ones expected to donate our time. This isn’t collaboration. It’s a pattern. One that wouldn’t fly in any other field.

💡 Would you ask a consultant to join your strategy session without pay?
Would you invite a UX designer to build your framework “for exposure”?
That’s exactly what’s happening in healthcare advocacy spaces—daily.

In this piece, I speak directly to the imbalance—and offer tools like the [Fair Market Value Calculator to help shift the model from extraction to equity.

📖 If you’ve experienced this dynamic—or contributed to it—it’s time we talk about it.

📰 Read the full article here: https://open.substack.com/pub/christinevonraesfeld/p/expertise-without-a-paycheck
Then share your thoughts. Let’s change the conversation—and the culture.



Have you been asked to work for free?

06/19/2025

Can't believe I'm turning 50! We're starting off the celebration this weekend and continuing with a week of random events. If you're in the Bay Area and would like to join us, send me a message for details.

06/15/2025

Thank you to the Stanford institute for Human Centered Artificial Intelligence for including The Light Collective in the Healthcare AI Policy Workshop on June 13th. I had the opportunity to join alongside Andrea Downing and Ysabel Duran (my brilliant co-authors on the AI Rights Initiative) for an important and timely discussion on how AI is shaping the future of healthcare.

We were especially glad to contribute a patient-centered perspective alongside advocate Ting Pun. When patients are part of these conversations, we move closer to building AI that is truly transparent, equitable, and aligned with real-world needs.

A few themes we shared during the workshop:
👉🏻 Patients deserve clear and accessible information about how AI influences their care.
👉🏻 Autonomy and trust must remain central; AI should support, not replace, human judgment.
👉🏻 Designing with equity and lived experience leads to better, more just outcomes.

We appreciate the opportunity to collaborate and keep pushing for healthcare innovation that starts with the people it’s meant to serve.

💭 Would you want AI involved in your medical care? Why or why not?

06/12/2025

Starting now, An AI Code of Conduct for Health & Medicine Publication Release Webinar with National Academy of Medicine. In the opening words of Victor Dzau, "Don't just read it, use it."

https://www.eventbrite.com/e/an-ai-code-of-conduct-for-health-medicine-publication-release-webinar-tickets-1344411985439?

This webinar will discuss key findings from a new NAM special publication, An Artificial Intelligence Code of Conduct for Health & Medicine.

06/11/2025

When I originally agreed to participate in , I never thought that sharing my genetic data for research, would be at the center of a debate about , ownership, and . But here we are.

Not only did I join in the 23andMe beta program but I actively recruited members of my , believing in the promise of better health outcomes. I saw an opportunity to help push and bring answers to a community that was struggling. Now, with the impending bankruptcy, we’re all wondering: Who really owns our data? Was this a moment of progress, or a hiding in plain sight?

Join me on June 16 at 8:30 AM PT as I moderate this urgent discussion:
“23andMe BioBankruptcy: Is It a Data Heist?” alongside Wes McClelland, Linda MacDonald Glenn, Lisa A. Berkley, PhD, Elizabeth Dreicer Camille Nebeker, Mike Corrigan, Ari Akerstein

We’ll unpack what this case means for the future of , health privacy, and the individuals who trusted these platforms with our most intimate data.

Your voice matters. Let’s talk.💜

Join the conversation!

06/05/2025

is the essential to . It fuels precision medicine, enhances drug discovery, and drives deeper insights into human health. But as we harness its power, we must also navigate the challenges of privacy, ethics, and equitable access.

Joïn us on for a conversation featuring quest speaker Mike Polcart founder of Labs and former VP & Chief Architect at . Together, we'll explore how is influencing the future of and , from possibilities to pitfalls in today's , "Does access to biodata accelerate innovation in biotech/ pharma?"

06/04/2025

Shared with Dropbox

06/04/2025

Exciting moments at the Stanford RAISE Health Symposium, where our very own Andrea Downing spoke passionately about the importance of including patients in the design of AI-driven health technologies.

Her message was clear: patients aren't just recipients of innovation—they must be co-creators in shaping the future of healthcare. As AI continues to evolve, ensuring transparency, ethical safeguards, and patient leadership is more crucial than ever.

At The Light Collective, we are honored to be part of these vital conversations and look forward to collaborating with industry leaders to drive meaningful change.