Understanding population health and realizing the goal of health equity require the collection, sharing, and use of comprehensive data – including race, ethnicity, and language (“REaL”) and sexual orientation and gender identity (“SOGI”) data. Yet entities are not able to do these things consistently today, as we learned when the COVID-19 pandemic exposed deficiencies in our data systems. The failures were especially evident in our systems for collecting and sharing REaL and SOGI data. Overall, we suffer from a lack of transparency as well as inconsistent or missing data, which compound historical injustices in our health systems.
If we are to address the barriers to care, we also must work together to reduce the barriers to REaL and SOGI data collection, use, and sharing. Collecting and analyzing these data helps health care stakeholders, government, research institutions, and business partners identify areas for action in policy, program, and product development. Sharing and using data can support patients individually at the point of care, and at the aggregate level, provide policymakers insights into population-level health needs. Finally, rich and comprehensive data can help reduce care disparities when tied to quality measures.
Blue Shield of California Industry Initiatives hosted events for stakeholders to foster better collaboration and understanding of their needs in developing strategies and solutions to the collection, use, and sharing of REaL and SOGI data. The first, publicly accessible event hosted on March 29, 2022, featured three lightning rounds from experts in the field who have been working to collect, share and use demographic data and featured an expert panel of health care funders in venture capital, philanthropy, health plans and government. The second event, hosted on April 6, 2022, featured small break out discussions with 37 individuals whose roles and organizations vary from health information technology, payers, providers, and government.
In this paper, we explore the recommendations highlighted by stakeholders during these events. These strategies chart a path forward to how health care, government, research institutions, and business partners can each advance the collection, use, and sharing of REaL and SOGI data to help achieve health equity.
We would like to thank all the partners who provided input on this action plan. The contributors represent a diverse group of healthcare organizations, including but not limited to providers, community health organizations, government, academia, health technology companies and health plans. In particular, we would like to thank the following individuals:
- Alethea Varra, Vice President, Clinical Care, Lyra Health
- Alice Hm Chen, Chief Medical Officer, Covered California
- Andy Slavitt, Former Senior Advisor to the Biden Administration COVID Response
- Cary Sanders, Senior Policy Director, California Pan-Ethnic Health Network
- Dan Chavez, Executive Director, Santa Cruz Health Information Organization
- Daniel Stein, President, Stewards of Change Institute
- Gabriella Barbosa, Managing Director of Policy, The Children’s Partnership
- Halima Ahmadi-Montecalvo, Senior Director, Research and Evaluation, Unite Us
- Jaime Bland, Chief Executive Officer, CyncHealth
- Jessica Kahn, Partner, McKinsey & Company
- Julia Skapik, Chief Medical Information Officer, National Association of Community Health Centers
- Katie Heidorn, Executive Director, Insure the Uninsured Project
- Kia Wilson, Community Health Advocate, Blue Shield of California
- Kristi Ebong, Head of Partnerships and Market Development, Define Ventures
- Kymie Thomas, Program Specialist, Community Outreach and Patient Empowerment
- Lisa Bari, Chief Executive Officer, Civitas Networks for Health
- Mark Savage, Managing Director, Digital Health Strategy & Policy, Savage & Savage LLC
- Naomi Senkeeto, Managing Director of Health Equity Policy, Blue Cross Blue Shield Association
- Naveen Rao, Founder & Managing Partner, Patchwise Labs
- Nelly Ganesan, Executive Director, Health Equity, Morgan Health
- Peter Robertson, Director of Insights, Analytics & Data Management, Purchaser Business Group on Health
- Robby Knight, Co-Founder & Chief Executive Officer, Soda Health
- Rocco Perla, Co-Founder, The Health Initiative
- Sandra Hernández, President and Chief Executive Officer, California Health Care Foundation
- Shireen McSpadden, Director of Homelessness and Supportive Services, City and County of San Francisco