With funding from the Gordon and Betty Moore Foundation and in collaboration with the Association of Academic Medical Colleges, CMSS developed a webinar series to address key questions related to the rapid development, deployment and implementation of Covid-19 focused clinical registries and clinical repositories by specialty societies and academia. Read more about the goals of the CMSS webinar series.

Moderated by Helen Burstin, MD, MPH, MACP

Panelists:
Esther Freeman, MD, PhD; Director MGH Global Health Dermatology; Director, Covid-19 Dermatology Registry, American Academy of Dermatology
Clifford Ko, MD, MS, MSHS, FACS, FASCRS; Director, Division of Research and Optimal Patient Care, American College of Surgeons; Vice Chair and Professor of Surgery and Health Services, University of California, Los Angeles (UCLA)
Etta Pisano, MD; Chief Research Officer, American College of Radiology; Profession in Residence at Harvard Medical School, Beth Israel Deaconess Medical Center
Jinoos Yazdany, MD, MPH; Chief, Division of Rheumatology, San Francisco General Hospital, Director, COVID-19 Global Rheumatology Alliance
Janis Orlowski, MD, MACP; Chief Health Care Officer, Association of American Medical Colleges

Moderator:
Atul Butte, MD, PhD; Priscilla Chan and Mark Zuckerberg Distinguished Professor; Director, Bakar Computational Health Sciences Institute, University of California, San Francisco; Chief Data Scientist, University of California Health (UC Health)

Panelists:
Tellen D. Bennett, MD, MS; Section Head, Informatics and Data Science; Associate Professor, Department of Pediatrics, University of Colorado School of Medicine; Attending Physician, Pediatric Intensive Care Unit, Children’s Hospital Colorado
Director, Informatics Core, Colorado Clinical and Translational Sciences Institute (CCTSI)
Andrew Ip, MD, MS; Outcomes and Value Research Division, John Theurer Cancer Center; Hackensack Meridian Health
Subha Madhavan, PhD, FACMI; Chief Data Scientist, Georgetown University Medical Center
Jessie Tenenbaum, PhD; Chief Data Officer, NC Department of Health and Human Services

This webinar will provide perspectives on:
What is required to accelerate availability and access to electronic data sources within registries, highlighting examples from Covid-19?
What data sources, traditional and novel, are captured and what is their potential to be used for real world evidence?
What commitments and resources are needed to access data in real time to address organizational and research needs?

Moderator:
Helen Burstin, MD, MPH, MACP

Panelists:
Elizabeth Garrett-Mayer, PhD; Division Director, Division of Biostatistics and Research Data Governance, Center for Research and Analytics (CENTRA), American Society of Clinical Oncology
Michael Howell, MD, MPH; Principal Scientist, Google
Clifford Ko, MD, MS, MSHS, FACS, FASCRS; Director, Division of Research and Optimal Patient Care, American College of Surgeons; Vice Chair and Professor of Surgery and Health Services, University of California, Los Angeles (UCLA)
Greg Martin, MD, MSc; Professor of Medicine, Emory University School of Medicine, Executive Associate Division Director, Division of Pulmonary, Allergy, Critical Care, and Sleep Medicine; President-Elect, Society for Critical Care Medicine

This webinar will provide perspectives on:
How past events (e.g., SARS) led organizations to be better prepared for Covid-19
The key shortcomings/gaps in infrastructures and data within hospitals that led them to create their Covid-19 registry
How technology can move the field forward
What steps are required to ensure that healthcare is proactive and prepared for the next event
Envisioning a future state of integrated registries, along with the key partners and the drivers that can assist in achieving this new vision

Moderator:
William J. Marks, Jr, MD, MS-HCM; Head of Clinical Science & Head of Neurology, Verily Life Sciences; Adjunct Clinical Professor of Neurology & Neurological Sciences, Stanford University School of Medicine

Panelists:
David Glazer; Engineering Director, Verily Life Sciences
Andrea Ramirez, MD; Assistant Professor of Medicine, Vanderbilt University of Medicine
Chris Treml; Director of Operations, Data Science Institute, American College of Radiology

This webinar will provide perspectives on:
The promises of multi-dimensional data platforms
What analytic tools and techniques are available within and outside of healthcare that can be leveraged
How the lessons learned from Covid-19 can be applied more broadly and to the next generation of clinical registries

Moderator:
Susannah Fox; Principal, Internet Geologist LLC; Former Chief Technology Officer, US Department of Health and Human Services

Panelists:
Gina Assaf; Independent digital design consultant/Leading the Patient-Led Research Group within Body Politic
Hannah Davis; Researcher with the Patient-Led Research Group within Body Politic
Emily Sirotich; COVID-19 Global Rheumatology Alliance; Canadian Arthritis Patient Alliance; and Department of Health Research Methods, Evidence, and Impact, McMaster University
Gary Wolf; Co-Founder, Quantified Self

This webinar will provide perspectives on:
How people living with health conditions are reliable sources of information and can contribute to the advancement of society through research, particularly in the investigation of complex and novel diseases.
Preparing for the future of integrated registries, driven by key partners and data providers, including patients and caregivers.
Building a biomedical research enterprise that incorporates self-collected time-series observations generated by patients.
How networked patients can help amplify the work of clinical registries and guide frontline clinicians to the latest research.
Read Moderator Susannah Fox’s blog post on this session: Patient-led research is a key element of pandemic response

Moderator:
Helen Burstin, MD, MPH, MACP

Panelists:
Kirsten Bibbins-Domingo, PhD, MD, MAS; Professor and Chair, Department of Epidemiology and Biostatistics; Lee Goldman, MD Endowed Chair in Medicine; Vice Dean for Population Health and Health Equity, School of Medicine University of California, San Francisco
Eliseo Perez-Stable, MD; Director of the National Institute on Minority Health and Health Disparities (NIMHD), National Institutes of Health (NIH)
Bill Wood, MD, MPH; Chair, Data Hub Oversight Group, ASH Research Collaborative; Associate Professor of Medicine, Division of Hematology, University of North Carolina at Chapel Hill
Clyde Yancy, MD, MSc, MACC, FAHA, MACP, FHFSA; Vice Dean, Diversity & Inclusion, Magerstadt Professor of Medicine, Professor of Medical Social Sciences, Chief, Division of Cardiology Northwestern University, Feinberg School of Medicine & Associate Director, Bluhm Cardiovascular Institute Northwestern Memorial Hospital

Overview:
While Covid-19 has had a negative effect across the nation and the world, significant disparities in both incidence and outcomes have been identified, including by race, ethnicity, and socioeconomic status (SES). Potential explanations include the varying effect of some risk factors, including cardiovascular disease and diabetes, as well as the impact of structural racism. In this webinar, we hope to explore important questions pertaining to disparities specific to Covid-19 that could significantly change the way we consider disparities in care and drive improvement strategies overall.

What can we learn from the health system’s incomplete and inaccurate capture of data on race, ethnicity and SES? What is needed to routinely capture and track these factors across all data systems, including clinical registries?
What are the opportunities to identify and track individual and community level risk factors that are predictors to poor outcomes (e.g., more essential front-line workers among black and Latinos)?
How can we effectively engage disadvantaged people and communities in clinical research and clinical registries? What strategies can be used to build and maintain trust in the work of our clinical registries and research?
How can we incorporate the assessment and discussion of structural racism into our research on disparities in care?
How can rapid-cycle research from clinical registries be used to move beyond just documenting disparities to driving reductions and improvements in care based on these data?