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 Table of Contents Toggle EpisodeProemWhen Life Throws Your Kid a CurveballEmerging Adults MatterYour Medical Records Called—They’re Lost and SeparatedOne Size Fits All? Please!Spoiler: This Affects Way More People Than You’d ThinkCan We Teach Tech to Understand ‘It’s Complicated’?All-or-Nothing Privacy: The Sledgehammer ApproachMacGyver Solutions: When Your Software Says ‘No’The Secret Society of People Who Actually CareJuggling Your Mom’s Meds and Your Kids’ Forms: A Sandwich Generative NightmarePlaying Gatekeeper (Because We’re Scared You’ll Overshare)80% We Can Solve + 20% That’s a NightmareInformed Consent: What If People Actually Understood?Needles in a Haystack: Finding Your 100 People WorldwidePlot Twist: When It’s Your Data, Everything ChangesTraining Wheels for Privacy: Teaching People to ChooseThe New Job Nobody’s Hired Yet: Your Privacy ConciergeCan We Build This So My Oma Can Use It?Tech’s Outrunning Privacy (And We’re All Just Watching)ReflectionRelated episodes from Health Hats 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 you, I think we bonded over the adolescent advisory team. Fabienne: That's exactly right. Yes. Health Hats: I was so impressed by the adolescents' engagement and how many of their observations were incorporated into the process and design. I found it to be a model for me. When I went to work for Advocates, Inc. in Framingham, which supported 40,000 people with disabilities, there were a lot of similar issues in terms of a continuum of cognitive, judgment abilities, communication abilities, and styles, and the challenge of understanding their preferences and their challenges, and then hard-wiring that into real life. What you did was open my eyes to a world that I wasn't aware of before that. I was so impressed by the adolescents' engagement and how many of their observations Your Medical Records Called—They're Lost and Separated Health Hats:  Now that I've evolved to where I am now of the big project I'm working on is we're developing a health data bank a receptacle for individuals to store any and all of their health slash medical data, whether it's EHR claims PDF preferences journals so that then people could authorize the use of their data using a combination of private and public large language models to query that ever expanding and changing data set we're in the really early stages of seed money. And I'm like, act you're successful, right? Because when you are successful, it's bang. It seems to me that the reason I wanted to talk to you was that I see the challenges that emerging adults face in terms of their preferences, rights, and safety as analogous — maybe not the same, but analogous — to language, relationships, and cognition, and that it's fluid. It's not like you set some standards. Because every situation is different at a different minute. So, I'll shut up. One Size Fits All? Please! Fabienne: No, you're exactly right. You've hit the nail on the head. It's precisely what we are working on and trying to help because it's very nuanced. And what's very important is to understand that each patient is an individual, and each individual has particular preferences about who they want to share their information with. And that may be within their family unit or outside it. And we have to honor their privacy preferences. We discuss this particularly in the pediatric and adolescent populations because there are specific state laws and conditions under which adolescent patients can seek care without parental consent. Spoiler: This Affects Way More People Than You'd Think Fabienne: In those situations, we really make sure we maintain privacy in line with the individual adolescent's preferences. But you're absolutely right that this extends beyond the adolescent population. We see this often with patients with disabilities or with older adults who have other caregivers or other people who are proxies to their patient portal. So, they're sharing their information with others, and there's certain information they don't necessarily want to share with everyone. And they entrust us with deeply personal information. And they want us to really take care of that information and keep it confidential if they choose to keep it confidential. Sometimes they really just want that conversation to be between them and their care team or their provider specifically. So you're exactly correct. This really extends beyond the adolescent population. Can We Teach Tech to Understand 'It's Complicated'? Health Hats: When I break that down, I think the challenge of taking a pulse, meaning where do they stand at this moment? What do they understand are the nuances or the implications of their decisions? So it's an understanding of life and self. Then there's the technical of how. How does that get hardwired into something? And then there's the interface, so people can go from their understanding, click a few buttons, and get what they want. And so it seems to me that you're in the middle of all of that and that you can't do your job if you don't have excellent teams that can do, not necessarily everybody, but the whole team has to be able to deal with all of that. Fabienne: Yes, you're exactly right. And it's tough. It's very challenging. We're lucky to have a very strong team in our IT department working on all of these things. But we're also dependent on the restrictions, capabilities, and functionalities that vendors have in their electronic health records and in the health information exchanges. And I think you noted this previously as well. There's an explosion in the interoperability space, where we're not just talking about sharing information with patient portals and proxy-to-patient portals, but across health information exchanges. So, we're sharing across institutions and, increasingly, with mobile health applications.