Trustworthy public health action depends on trusted data. On January 22, 2021 President Biden issued an executive order calling for the modernization of public health data infrastructures. The COVID-19 pandemic has brought to global attention not only key challenges facing the public sector in the generation of timely and accurate data, but also the need to grapple with the governance of data collected or leveraged for public health. Whose data count? How do the increasingly blurred distinctions between research, clinical care, and public health practice support or challenge data-sharing across sectors? This panel will draw on the groundbreaking work of four practitioners to imagine what the design of trustworthy data systems for 21st century public health should entail.

Moderator  

Flavia Chen, MPH, TAPP Fellow
Flavia Chen, MPH is a public health researcher whose work focuses on the ethical and policy implications of translational genomics, data governance across sectors and geographies, and population health. From 2015-2020, she worked at the University of California, San Francisco, managing interdisciplinary NIH grants studying the application of genome sequencing technologies in public health and clinical care. Flavia earned her MPH from the University of Washington's Institute for Public Health Genetics, and her BA in environmental studies and history from Bowdoin College. 

Panelists  

Stephanie Russo Carroll, DrPH, MPH 
Stephanie Russo Carroll, DrPH, MPH is Ahtna, a citizen of the Native Village of Kluti-Kaah in Alaska, and of Sicilian-descent. She is Assistant Professor of Public Health and Associate Director for the Native Nations Institute at the University of Arizona. Stephanie’s research explores the links between Indigenous governance, data, the environment, and community wellness. Her interdisciplinary research group, the Collaboratory for Indigenous Data Governance develops research, policy, and practice innovations for Indigenous data sovereignty. Her research, teaching, and engagement seek to transform institutional governance and ethics for Indigenous control of Indigenous data, particularly within open science, open data, and big data contexts. Stephanie co-founded the US Indigenous Data Sovereignty Network and co-founded and chairs the Global Indigenous Data Alliance (GIDA). She Chairs the Indigenous Data Working Group for the IEEE P2890 Recommended Practice for Provenance of Indigenous Peoples' Data. Stephanie is an ENRICH: Equity for Indigenous Research and Innovation Coordinating Hub Global Chair.  

Megan Doerr, MS, LGC 
Megan Doerr, MS, LGC is an associate director at Sage Bionetworks where she supports innovative, participant-centric approaches to open science. Ms. Doerr leads Sage’s applied ELSI research team, concentrating on the ethical, legal, and social issues associated with informed consent, research participation, and data sharing. She has developed informed consent processes for a variety of studies including the NIH’s All of Us Research Program and the NIDDK Kidney Precision Medicine Project, and served as a consultant to several of the NIAID’s COVID-19 Prevention Network (CoVPN) vaccine trials. Ms. Doerr led the development of a replicable methodology for the release of app-mediated research data to broad communities of solvers that has been applied to a variety of mobile datasets including those of the Parkinson mPower and Mole Mapper studies. She chairs the researcher application subcommittee for the All of Us Research Program and sits on the researcher access board for the All of Us dataset. Ms. Doerr is deeply engaged with the Global Alliance for Genomics and Health, promoting global innovation and best practices in research governance, including co-chairing the National Initiatives’ Informed Consent working group. Ms. Doerr has served as a facilitator for a number of professional working groups, workshops, and meetings, including the All of Us Research Program’s two research workshops in March, 2018 and June, 2019. A former botanist and middle school teacher, Ms. Doerr is a licensed genetic counselor who previously practiced at the Cleveland Clinic.

Lisa M. Lee, PhD, MA, MS 
Lisa M Lee, PhD, MA, MS is Associate Vice President for Scholarly Integrity and Research Compliance and faculty in Population Health Sciences at Virginia Tech. She is an epidemiologist, bioethicist, and ethics educator. She served for 20 years in a variety of roles in federal service, including Executive Director of the Bioethics Commission in the Obama administration, Chief of Bioethics at Walter Reed Army Institute of Research, and Chief Science Officer of public health surveillance at CDC. She was inaugural chair of the Ethics Section of the American Public Health Association, and elected 2021-2023 board chair of the Association for Practical and Professional Ethics. Her current work focuses on ethics pedagogy, public health ethics, and deliberation as an ethics decision-making method. 

Kimberlyn McGrail, PhD, MPH 
Kimberlyn McGrail, PhD, MPH is a Professor in the UBC School of Population and Public Health and Centre for Health Services and Policy Research, Director of Research for UBC Health, and Scientific Director of Population Data BC and Health Data Research Network Canada. Her research interests are quantitative policy evaluation and all aspects of population data science. In 2019-2020 she participated as a member of the Canadian Institute for Advanced Research Task Force on AI4Health. She is currently a Canadian representative to with the Global Partnership for AI as part of the data governance working group, and a member of the Expert Working Group for the Pan-Canadian Health Data Strategy. She holds a PhD in Health Care and Epidemiology from the University of British Columbia, and a Master’s in Public Health from the University of Michigan.

From left to right: Flavia Chen, Stephanie Russo Carroll, Megan Doerr, Lisa M. Lee, Kimberlyn McGrail

From left to right: Flavia Chen, Stephanie Russo Carroll, Megan Doerr, Lisa M. Lee, Kimberlyn McGrail