University of California Health
Got Health Data? Moving Toward a Justice-Based Model of Data Use Conference April 2022
UC Health, CDI2, and the Health Data Governance Implementation Task-force Subcommittee A put on a two-day virtual conference that brought together experts across different disciplines including researchers, bioethicists, privacy experts, clinicians, patients, and industry leaders to explore issues around health data use.
These issues include how to meaningfully and sustainably incorporate the patient voice into decisions around data use, data ethics, and governance, defining public good in the context of data analytics, and collaborating with government and for-profit entities.
The event brought together members of the University of California community, including patients, clinicians, faculty, privacy and regulatory experts, IT specialists, and others.
President's Ad Hoc Task Force Report on Health Data Governance Report (pdf)
Conference Video
Video Title: Got Health Data? Moving Toward a Justice-Based Model of Data Use
Description: This conference webinar brings together experts across different disciplines, including researchers, bioethicists, privacy experts, clinicians, patients, and industry leaders, to explore issues around health data governance within a justice-oriented framework. Topics include incorporating the patient voice, ethical data use, defining public good, and collaborating with government and for-profit entities.
The conference was originally hosted live on April 19-20, 2022, by the UC Health Data Governance Task Force.
Sessions
- 00:00:00 DAY 1 INTRODUCTION
- 00:01:08 Welcome and Opening Remarks | Carrie Byington, MD
- 00:06:11 The Power of Data Analytics | Atul Butte, MD, PhD
- 00:24:50 Keynote: Incorporating the … Person’s Voice | Patricia Flatley Brennan, RN, PhD
- 01:03:56 Panel - Incorporating the Patient Voice into Data Use + Q&A
- 02:00:28 BREAK
- 02:01:13 Fit for Purpose: Aligning Health Data Use … with the Public Good | Donna R. Cryer, JD
- 02:12:59 Panel - Research Use of Health Data + Q&A
- 03:15:23 Interactive Session | Sarah Dry, MD & Susan Pappas
- 03:25:50 Closing Remarks - Day 1 | Cora Han, JD
- 03:32:30 DAY 2 INTRODUCTION
- 03:33:18 Welcome Back & Opening Remarks | Christine Cassel, MD
- 03:42:08 Health Data Justice: Definitions & Directions | Jay Shaw, PhD
- 04:02:40 Panel - Ethics of Data Use and Governance + Q&A
- 05:17:20 BREAK
- 05:20:22 … Cambrian Explosion in Public-Private Partnership Structures | John Wilbanks
- 05:38:54 Roundtable - Collaborating with Government and For-Profit Entities
- 06:51:11 Interactive Activity | Sarah Dry, MD & Susan Pappas
- 07:00:57 Closing Remarks - Day 2 | Cora Han, JD
Panelists
Incorporating the Patient Voice into Data Use:
- Ysabel Duron (Moderator)
- Donna Cryer, JD
- Julie Harris-Wai, PhD, MPH
- Deirdre Mylod, PhD
Research Use of Health Data:
- Pagan Morris, MPH (Moderator)
- Paul Boutros, PhD, MBA
- Liz Salmi
- Kayte Spector-Bagdady, JD, MBe
Ethics of Data Use and Governance:
- Christine Cassel, MD (Moderator)
- Jody Platt, PhD, MPH
- Kristen Rosati, JD
- Jay Shaw, PhD
Collaborating with Government and For-Profit Entities:
- Niall Brennan, MPP
- Deven McGraw, JD, MPH
- Amy McGuire, JD, PhD
Pre-conference Primer Videos
Conference Agenda April 19, 2022
| Welcome and Opening Remarks | Carrie Byington, MD Executive Vice President, University of California Health (UCH) |
| The Power of Data Analytics | Atul Butte, MD, PhD Chief Data Scientist, UCH |
| Keynote: Keynote: Incorporating the patient Person’s Voice into Decisions Around Data Use | Patricia Flatley Brennan, RN, PhD Director, National Library of Medicine |
| Panel – Incorporating the Patient Voice into Data Use + Q&A |
Ysabel Duron (Moderator) Julie N. Harris-Wai, PhD, MPH Deirdre Mylod, PhD |
| Defining the Public Good for Health Data Use | Donna R. Cryer, JD President & CEO, Global Liver Institute |
| Panel – Health Data and Research Use + Q&A |
Pagan Morris, MPH (Moderator) Kayte Spector-Bagdady, JD, MBe |
| Interactive Session |
Sarah M. Dry, MD Susan Pappas, CPXP |
| Closing Remarks | Cora Han, JD Chief Health Data Officer, UCH |
Conference Agenda April 20, 2022
| Welcome Back/Opening Remarks | Christine Cassel, MD Senior Advisor for Strategy and Policy, Department of Medicine University of California San Francisco |
| The Ethics of Data Use | Jay Shaw, PhD Assistant Professor & Research Director, University of Toronto |
| Panel – Ethics of Data Use and Governance + Q&A | Christine Cassel, MD (Moderator) Senior Advisor for Strategy and Policy, Department of Medicine, University of California San Francisco Jody Platt, PhD, MPH Assistant Professor, University of Michigan Kristen Rosati, JD Partner, Coppersmith Brockelman PLC Jay Shaw, PhD Assistant Professor & Research Director, University of Toronto |
| Collaborations with External Parties – Risks and Benefits | John Wilbanks Head of Data, Biogen Digital Health |
| Roundtable – Collaborating with Government and For-Profit Entities |
Niall Brennan, MPP Chief Analytics and Privacy Officer, Clarify Health Deven McGraw, JD, MPH Lead, Data Stewardship & Data Sharing Citizen Platform at Invitae Amy McGuire, JD, PhD Professor & Director, Baylor College of Medicine |
| Interactive Session | Sarah M. Dry, MD Professor & Chair David Geffen School of Medicine at UCLA Department of Pathology & Laboratory Medicine Susan Pappas, CPXP Executive Director, UCSF Health Experience Excellence Division, UCSF Health |
| Closing Remarks | Cora Han, JD Chief Health Data Officer, UCH |
Speaker Bios
Paul Boutros, PhD, MBA
Professor, University of California, Los Angeles
Paul Boutros, PhD, MBA, is a Professor in the Departments of Human Genetics and Urology at the University of California, Los Angeles. He currently serves as the Vice-Dean for Research at UCLA’s David Geffen School of Medicine, as Director of the UCLA Jonsson Comprehensive Cancer Center’s Cancer Data Science program, and as Associate Director of Cancer Genomics at the UCLA Institute for Precision Health. The research in Boutros’ laboratory lies at the intersection of clinical questions and molecular and imaging big data. The team focuses on how these diverse pieces of information can be integrated to personalize therapy for cancer patients by using and innovating statistical and machine-learning techniques. Their work covers a range of diseases from cancers of the prostate to those of the thyroid and brain, and a range of settings including sex-differences, the effects of exercise and the influence of aging.
Patricia Flatley Brennan, RN, PhD
Director, National Library of Medicine
Dr. Brennan is the Director of the National Library of Medicine (NLM) at the National Institutes of Health (NIH), where she oversees the world’s largest biomedical library. She has positioned the Library to be the hub for biomedical data science at NIH and across the globe. She holds an appointment as associate investigator in the National Institute of Nursing Research Division of Intramural Research, where she directs the Advanced Visualization Laboratory. Before joining NIH, she was the Lillian L. Moehlman Bascom Professor in the School of Nursing and College of Engineering at the University of Wisconsin–Madison. Dr. Brennan is a member of the National Academy of Medicine. She is a fellow of American Institute for Medical and Biological Engineering (AIMBE), the American Academy of Nursing, the American College of Medical Informatics, and the New York Academy of Medicine.
Atul Butte, MD, PhD
Chief Data Scientist, University of California Health System (UC Health)
Atul Butte, MD, PhD is the Priscilla Chan and Mark Zuckerberg Distinguished Professor and inaugural Director of the Bakar Computational Health Sciences Institute (bchsi.ucsf.edu) at the University of California, San Francisco (UCSF). Dr. Butte is also the Chief Data Scientist for the entire University of California Health System, the tenth largest by revenue in the United States, with 20 health professional schools, 6 medical schools, 6 academic health centers, 10 hospitals, and over 1000 care delivery sites. Dr. Butte has been continually funded by NIH for 20 years, is an inventor on 24 patents, and has authored over 200 publications, with research repeatedly featured in the New York Times, Wall Street Journal, and Wired Magazine. Dr. Butte was elected into the National Academy of Medicine in 2015, and in 2013, he was recognized by the Obama Administration as a White House Champion of Change in Open Science for promoting science through publicly available data.
Carrie L. Byington, M.D.
Executive Vice President, University of California Health
Dr. Byington leads the University of California’s health enterprise as the Executive Vice President of UC Health and is a professor of pediatrics at UCSF. Since joining the University at the end of October 2019, she has led the COVID-19 response for the UC system and is an active partner with the state of California providing expertise for pandemic response. As a board-certified clinician in General Pediatrics and Pediatric Infectious Diseases, she has worked to support health equity and to eliminate health disparities. Her research spans the translational spectrum and has focused primarily on bacterial and viral respiratory pathogens. She has mentored more than 100 students, trainees, and faculty members, the majority from backgrounds under-represented in medicine.Dr. Byington's career accomplishments include awards from the Robert Wood Johnson Foundation, the American Academy of Pediatrics, the Centers for Disease Control and Prevention, the National Institutes of Health and Drexel University College of Medicine’s Institute for Women’s Health and Leadership. She is an elected member of the National Academy of Medicine and National Academy of Inventors. She was the chair of the Infectious Diseases Advisory Group for the US Olympic Committee, responsible for protecting Team USA athletes and staff from Zika Virus during the 2016 Olympic Games in Brazil. Dr. Byington joined UC after holding leadership roles at Texas A&M University System and the University of Utah. She received her bachelor of science in biology from Texas A&M University and doctor of medicine from Baylor College of Medicine, both with honors. She trained in pediatrics at Texas Children's Hospital and in pediatric infectious diseases at UCSF.
Donna R. Cryer, JD
President & CEO, Global Liver Institute
Donna R. Cryer, JD, is the Founder, President, and Chief Executive Officer of the Global Liver Institute (GLI), the only patient-driven liver health nonprofit operating in the U.S. and Europe. She has channeled her personal experience as a patient with inflammatory bowel disease and as a 27-year liver transplant recipient into professional advocacy across a career in law, policy, consulting, public relations, clinical trial recruitment, and nonprofit management. For almost a decade, Mrs. Cryer founded and led CryerHealth, a healthcare consulting firm providing strategic counsel to top biopharmaceutical companies, patient advocacy organizations, and emerging technology firms on patient engagement in health information technology, drug discovery, and clinical decision making. Mrs. Cryer was proud to serve as a member of the White House Task Force on e-Health Equity in 2013. As part of the task force, she worked with a summit of experts on health disparities and health information technology to establish a framework to ensure that underserved populations benefit from advances in health technologies.
Ysabel Duron
Founder & Executive Director, The Latino Cancer Institute
Ysabel Duron is a pioneering, award-winning, Latina journalist; a 21-year cancer survivor; and a leading authority in Latino/Hispanic cancer education, advocacy, and community engagement. Duron is the Founder/Executive Director of The Latino Cancer Institute, launched in 2017 to amplify Latino voices nationally and demand action to eliminate the Latino cancer burden. Most recently, she was invited to the White House for President Joe Biden’s announcement to reignite the Cancer Moonshot initiative. Her advice to the President’s point man, ‘You need community voices at the table to make it work!”Duron’s encore career as a patient advocate and non-profit agency builder commenced when she was diagnosed with cancer in 2000. Her first two agencies developed programs for low-income, Spanish-speaking, immigrant communities to address gaps along the cancer continuum, including education, screening, psychosocial support groups, and a lay community navigator program to guide patients in the public health care system in San Jose, California. Currently Duron serves on the IRB for the All of Us Research Program; the California Institute for Regenerative Medicine; the California Governor's Office on the Advisory Committee to Advance Precision Medicine Initiatives; and the University of California's Center for Data Integration, where she advocates for diversity, equity, and inclusion measures requiring stakeholders to demonstrate research and service for all communities in their footprint.
Cora Han, JD
Chief Health Data Officer, University of California Health
Cora Han is the Chief Health Data Officer for University of California Health (UCH) and Executive Director of the Center for Data-driven Insights and Innovation (CDI2) at UCH. In her role, she develops and implements strategies for leveraging health data in a responsible and innovative way, and directs UC system-wide health data governance initiatives. Cora joined UCH from the Federal Trade Commission’s Division of Privacy and Identity Protection where she played a leading role on health privacy matters for the Commission in both the enforcement and policy arenas.
Amy McGuire, JD, PhD
Professor & Director, Baylor College of Medicine
Amy McGuire, JD, PhD, is the Leon Jaworski Professor of Biomedical Ethics and Director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine. She researches ethical and policy issues related to emerging technologies and innovative therapeutics, with a particular focus on genetics and genomics, big data, neuropsychology, and the clinical integration of novel neurological devices. Her research is funded by the National Institutes of Health. Dr. McGuire has received numerous teaching awards at Baylor College of Medicine, was recognized by the Texas Executive Women as a Woman on the Move in 2016, and has been invited to give two TED talks: a 2014 TEDMed talk, titled “There is no Genome for the Human Spirit” and a 2022 TEDx talk, titled “Can Creating Moments of Meaning Improve Mental Health?” She has served as a member of the National Advisory Council for Human Genome Research and as an advisor to the X Prize in Genomics. Currently, Dr. McGuire is on the board of the Greenwall Foundation, is a Hasting’s Center Fellow, and is a member of the Scientific Advisory Board for Geisinger Research and The Morgridge Institute of Research.
Pagan Morris, MPH
Program Manager, University of California Health
Pagan Morris is the Program Manager for the Center for Data-driven Insights and Innovation (CDI2) at the University of California Health (UCH). In this role, Pagan provides strategic guidance, and advises on a variety of initiatives and public health policies. Prior to coming to CDI2, she worked in clinical quality improvement initiatives, as well as on the establishment of the Center for BRCA Research at the Helen Diller Comprehensive Cancer Center at UCSF. Pagan has spent the bulk of her public health career managing population-based research studies on a variety of cancers, including childhood leukemia, and brain, breast, and lung cancers in multi-ethnic cohorts. Pagan holds a Bachelor of Arts in Women's Studies from Mills College, and a Master of Public Health with a focus on Community Health Education from San Jose State University. Pagan joined CDI2 in Fall 2019.
Deirdre Mylod, PhD
Executive Director, Institute for Innovation & SVP Research and Analytics, Press Ganey
Dr. Deirdre Mylod has spent over 20 years at Press Ganey researching the patient experience and how it relates to cross-domain outcomes of engagement and clinical quality. She is the architect of Press Ganey’s model of Reducing Patient Suffering and has extended her work to the concepts of deconstructing the experience of clinicians to better understand engagement, burnout, and resilience. Dr. Mylod joined Press Ganey in 1997 and currently serves as the executive director of the organization’s Institute for Innovation and senior vice president of Research & Analytics. In this joint role, she is responsible for advancing the understanding of the entire patient experience, including patient perceptions of care, clinical process, and outcomes. Through the Institute, Mylod partners with leading health care providers to study and implement transformative concepts for improving the patient experience. Mylod holds a master’s degree and a PhD in psychology from the University of Notre Dame.
Jody Platt, PhD, MPH
Assistant Professor, University of Michigan
Jody Platt, PhD, MPH is an Assistant Professor of Learning Health Sciences trained in medical sociology and health policy at the University of Michigan. Her research focuses on issues at the intersection of informatics and ethics. She is interested in understanding what makes data-driven health trusted and the pathways for earning, achieving, and sustaining trust across stakeholders.
Kristen Rosati, JD
Partner, Coppersmith Brockelman PLC
Kristen Rosati is a partner at Coppersmith Brockelman PLC. Kristen is considered one of the nation’s leading “Big Data” and HIPAA compliance attorneys. She is a Past President of the American Health Law Association. Kristen has been listed in Best Lawyers in America for health care since 2007 and was Best Lawyers’ 2021, 2017 and 2014 Phoenix Health Care Law “Lawyer of the Year.” She is also recognized in Super Lawyers and Chambers for health care and data privacy/security. Kristen was chosen as one of Outstanding Business Women in Arizona in 2017 and one of the 50 Most Influential Women in Arizona Business in 2013, and received the Health Care Leadership Award for Legal Advocate of the Year in 2014. Kristen has been recognized for a number of years as one of Arizona’s Top 100 Lawyers by Arizona Business Magazine. Kristen received her B.A., with high honors, and her J.D., cum laude, from the University of Michigan. She clerked for the late Judge Thomas Tang of the U.S. Court of Appeals for the Ninth Circuit and for the late Judge Earl H. Carroll of the U.S. District Court for the District of Arizona. Kristen can be reached at krosati@cblawyers.com; 602-391-4997.
Liz Salmi
Chief of Communications & Patient Initiatives for OpenNotes, Beth Israel Deaconess Medical Center
Liz Salmi is Chief of Communications & Patient Initiatives for OpenNotes at Beth Israel Deaconess Medical Center, based in Boston, MA. She helps clinicians, hospitals, health systems, researchers, and patient advocates understand the changing nature of patient-clinician communication in an age of growing health information transparency. Her work focuses on involving patients and care partners in the co-design of research and research dissemination. Liz is carving a novel path for non-traditional/patient investigators and those who want to work with them. As a person living with a malignant brain tumor, she is passionate about helping all people tap into their curiosity by improving their experience as patients. Over the last 15 years Liz 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 2021, Liz and colleagues were awarded a $12.8 million Center Grant from the National Cancer Institute to determine optimal methods for patient enrollment in a cancer registry. Liz is a patient at UC Davis Health and UCSF Health in Northern California.
Jay Shaw, PhD
Assistant Professor & Research Director, University of Toronto
Jay Shaw is Assistant Professor in the Department of Physical Therapy at University of Toronto with cross-appointment to the Institute of Health Policy, Management and Evaluation. He serves as Research Director of Artificial Intelligence (AI), Ethics & Health at the University of Toronto Joint Centre for Bioethics, and adjunct Scientist at Women’s College Hospital. He practiced as a physical therapist in community-based care prior to completing his PhD in 2012. Jay has consulted on policy development for AI in health care with the World Health Organization, Public Health Agency of Canada, and the Ministry of Health in Ontario, Canada. Jay’s program of research addresses the implementation and ethical implications of innovations in health care, with a special focus on equity-promoting models of community-based care, digital health technologies, and applications of AI in health care.
Kayte Spector-Bagdady, JD, MBe
Associate Director & Assistant Professor, University of Michigan Medical School
Professor Kayte Spector-Bagdady, JD, MBe, is an Associate Director at the Center for Bioethics and Social Sciences in Medicine and an Assistant Professor of Obstetrics and Gynecology at the University of Michigan Medical School. She is also the Chair of the U-M Research Ethics Committee and is Associate Editor for the American Journal of Bioethics. A lawyer and bioethicist by training, the overarching goal of Prof. Spector’s work is improving the governance of secondary research with health data and specimens in order to increase the accessibility of data and generalizability of advances across diverse communities. Her work has been funded by the National Human Genome Research Institute, the National Cancer Institute, the Greenwall Foundation, and the National Center for Advancing Translational Sciences; her recent articles have been published in The New England Journal of Medicine and Science, among others. Previously, Prof. Spector was an Associate Director for President Obama’s Presidential Commission for the Study of Bioethical Issues, a Board Member of the American Society for Bioethics & Humanities, and a practicing drug and device attorney. She received her JD and MBioethics from the University of Pennsylvania Law School and School of Medicine after graduating from Middlebury College.