About Me
I grew up in Rio de Janeiro and moved to San Francisco in 1990, where I built a career in digital design and technology. My life took a different turn when I was diagnosed with hypertrophic cardiomyopathy and received an implantable defibrillator.
That experience transformed me into a patient advocate. I’ve been honored by the Obama White House as a Champion of Change for Precision Medicine and now serve on the NIH All of Us Research Program, PCORI’s THRIVE Trial, and the advisory board of UCSF/UC Berkeley’s Computational Precision Health program.
What sets me apart is not just my advocacy, but how I live it. I use generative AI daily to manage my own health and my father’s care. My work sits at the intersection of personal experience, critical thinking, and the philosophy of patient autonomy.
I invite you to read my reflections on the evolving doctor-patient relationship in the Journal of Participatory Medicine, where colleagues and I discuss how generative AI is reshaping care.
Highlights & Credentials
Research Partnership
20+ years as a patient-research partner in biomedical studies
Participant Ambassador, NIH All of Us Research Program
Participant Partner, Nutrition for Precision Health Study
Co-Chair, PCORI’s Patient Engagement Working Group (THRIVE Trial)
Multiple PCORI patient-centered research collaborations
Recognition & Impact
White House Champion of Change for Precision Medicine
Former Member Innovator in Residence, Kaiser Permanente
Advisor, UCSF/UC Berkeley Computational Precision Health
TEDx speaker; featured on NPR and in the Wall Street Journal
Publications & Collaborations
Browse the peer-reviewed papers I’ve contributed to, including independent and collaborative work, on my ORCID profile.
Guiding Principles
Autonomy
Patients must have the final say in their care.
Critical Thinking
Every claim, whether from doctor, institution, or AI, must be questioned.
Equity
Technology should break down barriers, not deepen them.
Expanded Health Literacy
Health literacy must now include AI literacy, data literacy, and the ability to challenge misinformation.
Trust Reimagined
Institutions may falter. Patients must learn to build new forms of trust with tools, communities, and themselves.
Agency Through Praxis
Reflection and action must lead to liberation. Patients can and should use AI to reclaim authorship of their own health narratives.