Give Me My Damn Data. Then What? Managing Permissions.
Your health data belongs to you—but how can you share it safely? Fabienne Bourgeois, MD, exposes the complex truth about privacy, permissions, and data control. Summary According to Fabienne Bourgeois, MD, patients want control over their health data, but privacy preferences and constant changes complicate this. The discussion is relevant to people with disabilities, caregivers, and others navigating complex health information. About 80% of people share common privacy concerns that current systems can’t address. The remaining 20% need more detailed controls and customization, though balancing autonomy with privacy remains challenging. Ownership means individuals have the right to participate in research and make informed choices. They need “digital intermediaries”— professionals who assist with data sharing—and genuinely intuitive interfaces. Privacy protections must remain a top priority as health and AI tools continue to develop. Click here to view the printable newsletter with images. More readable than a transcript, which can also be found below. Contents Please comment and ask questions: at the comment section at the bottom of the show notes on LinkedIn via email YouTube channel DM on Instagram , TikTok to @healthhats Substack Patreon Production Team Kayla Nelson: Web and Social Media Coach, Dissemination, Help Desk Leon van Leeuwen: editing and site management Oscar van Leeuwen: video editing Julia Higgins: Digit marketing therapy Steve Heatherington: Help Desk and podcast production counseling Joey van Leeuwen, Drummer, Composer, and Arranger, provided the music for the intro, outro, proem, and reflection Claude , Perplexity , Auphonic , Descript , Grammarly , DaVinci Podcast episode on YouTube Inspired by and Grateful to: Alexis and Sara Snyder, Amy and Morgan Gleeson, Fatima Mohammed Ighile, Esosa Ighile, Jill Woodworth, Tomas Moran, Marianne Hudgins Photo Credits for Videos 80/20 by Austin Distel on Unsplash Design flaws by Getty Images on Unsplash Privacy by Hector Reyes on Unsplash Links and references Fabienne Bourgeois, MD LinkedIn and Publications National Center for Medical Legal Partnerships Episode Proem The slogan, “ Give Me My Damn Data,” began in 2009 with E-Patient Dave DeBronkart as a call for transparency and control: patients arguing that real involvement in their healthcare needs open access to their personal health information. But once we have our data, what will we do with it? Who will we share it with, and in what situations? What are the personal and technical challenges of managing that sharing? I know enough to be dangerous about data-sharing technology. I do understand the personal and relationship sides of data sharing, though. To learn more, I reached out to my former colleague, Fabienne Bourgeois , an Adolescent Medicine doctor and Associate Chief Medical Information Officer (ACMIO) at Boston Children’s Hospital. Fifteen years ago, we worked together, learning from emerging adults about their worries and issues with data sharing. We enjoyed catching up and reviewing the current landscape. For my followers who prefer the written word, this transcript has been lightly edited and organized for readability. When Life Throws Your Kid a Curveball Health Hats: Hi. When did you first realize health was fragile? Fabienne: Oh, that started pretty early on in medical school. I had some very transformative interactions and experiences with patients and families during my medical school rotations, particularly in pediatrics, which really led me to pursue a career in pediatrics. But there really were some extraordinary families. And it just became very apparent that things could change very quickly and that patients and parents were managing patients with really chronic conditions. Regularly, something could change—really change —and we had to be very vigilant about everything. And the families, in particular, were the most vigilant about their child’s care. Emerging Adults Matter Health Hats: When I met