EPISODE 70
Mar 25, 2026

Patient Agency in the Age of AI with Liz Salmi & Hugo Campos

Patient innovators Liz Salmi and Hugo Campos join The Other 80  to discuss the evolving role of patients in healthcare, using the recent release of ChatGPT Health as a lens. Drawing on their personal experiences, including Liz's work with OpenNotes and Hugo's long struggle for access to his cardiac device data, they explore how technology can serve as a tool for patient agency and a bridge for collaboration, rather than a source of conflict, between patients and clinicians. 

Claudia, Hugo and Liz dive into:
  • How patients who are sick and scared often choose sharing over privacy
  • Why Hugo still can’t access his implanted device data
  • The need for a new doctor-patient relationship grounded in collaboration, not control

Liz says AI is surfacing the same reactions she saw around patients googling health information:

“It makes me think of the Dr. Google era when clinicians were like, ‘patients shouldn't go online and look for information about their own health because they don't know how to search accurately for their own health information’. And I think we're at this early stage of the tension between health systems wanting to still control how patients find their own health information, versus our own curiosity and exploration of digging into our own health information and… asking the questions that are important to us and then discovering the answers ourselves in our own journey.”

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ABOUT OUR GUESTS

Hugo Campos is an internationally recognized patient advocate, combining creative and technical expertise to promote participatory medicine and patient-centered, AI-enabled healthcare. Named a White House Champion of Change for Precision Medicine by President Obama in 2015, he advocates for patient rights and health data access while managing his own cardiac condition. Hugo serves on the NIH’s All of Us Research Program Steering Committee, co-leads patient engagement for PCORI’s THRIVE trial, and advises UCSF/UC Berkeley’s Computational Precision Health program. A TEDx Cambridge speaker, his advocacy has been featured in national media and scientific publications. Hugo lives in Oakland, California, with his husband, elderly father, and Memphis the cat.

Liz Salmi is the Communications & Patient Initiatives Director for OpenNotes. In this role, Liz helps clinicians, hospitals and health systems understand through “the patient’s eyes” the changing nature of patient-clinician communication in an age of growing transparency. Her research areas of interest include: the effects of transparency on patient-clinician communication, stakeholder engagement, research dissemination, and the role of social media in patient-clinician-researcher collaborations.

As a person living with a low grade malignant brain tumor, Liz is passionate about helping all people engage in their own health care by improving their experience as patients. Over the last 17 years she has been: a research subject; an advisor in patient stakeholder groups; a leader in “patient engagement” research initiatives; and an innovator, educator and investigator in national educational and research projects. In addition to her work with OpenNotes, Liz led the Brain Cancer Quality of Life Collaborative, a multi-stakeholder group dedicated to advancing science and improving the quality of life for people with malignant brain tumors. In fall 2021, members of the BCQoLC team (along with established investigators), were awarded a $12.8 million Center Grant from the National Cancer Institute to determine optimal methods for patient enrollment in a brain tumor registry.

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For more information on The Other 80 and to connect with our team, please email claudia@theother80.com and follow us on Twitter and LinkedIn.