RAISE Workshop Series Summaries

During the RAISE Kickoff session, we had welcome remarks from Susan Winkler, CEO of the Reagan-Udall Foundation, and RDML Richardae Araojo, FDA Associative Commissioner for Minority Health and Director of the Office of Minority Health and Health Equity.  During the session we heard five presentations on the importance of and barriers to reporting, collecting, and curating race and ethnicity data in health care.

During RAISE workshop II, we had welcome remarks from Susan Winckler, CEO of the Reagan-Udall Foundation, and RDML Richardae Araojo, FDA Associate Commissioner for Minority Health and Director of the Office of Minority Health and Health Equity. During the session we heard two presentations. First, Dr. Leo Russo of Pfizer, Inc., provided a framework on improving diversity in clinical trial recruitment. Next, Kate de Lisle of Leavitt Partners, presented an overview of how the value-based payment system advances health equity. The session was closed with a discussion moderated by Dr. Amy Abernethy.

During RAISE workshop III, we had welcome remarks from Susan Winckler, CEO of the Reagan-Udall Foundation, and RDML Richardae Araojo, FDA Associate Commissioner for Minority Health and Director of the Office of Minority Health and Health Equity. During the session we heard three presentations. First, Dr. Carla Rodriguez-Watson, RAISE PI, summarized our previous RAISE workshops and their connection to workshop III. Then, Meredith Welsh described how SameSky Health works with diverse populations to help them engage with the health care system and the infrastructure needed to collect the necessary data to develop actionable insights. Finally, Andrew Kress of HealthVerity presented an overview of the infrastructure used to support the robust capture of multi-level and longitudinal race and ethnicity data (R&E). The session closed with a discussion moderated by Dr. Oscar Benavidez of Massachusetts General Hospital.

During RAISE workshop IV, we had welcome remarks from Susan Winckler, CEO of the Reagan-Udall Foundation, and Dr. Christine Lee-Flemming, Strategic Research Engagement Lead of the Office of Minority Health and Health Equity at the FDA. During the session we heard three presentations. First, Dr. Carla Rodriguez-Watson, RAISE PI, summarized our previous RAISE workshops and their connection to workshop IV. Then, Silas Buchanan of the Institute for eHealth Equity described how cultural humility and community partnerships can be used to improve health equity. Finally, Aparna Sridhar of Epic Systems presented on technology at Epic Systems that meet workflow and individuality needs. The session closed with a discussion moderated by Dr. Elizabeth Cohn of Hunter College.

During RAISE workshop V, Susan Winckler, CEO of the Reagan-Udall Foundation, and RDML Richardae Araojo, FDA Associate Commissioner for Minority Health and Director of the Office of Minority Health and Health Equity, welcomed everyone. During the session we heard three presentations. First, Dr. Carla Rodriguez-Watson, RAISE PI, summarized our previous RAISE workshops and their connection to workshop V. Then, Ronnie Tepp of Pyxis Partners presented a case study in community engagement and inclusion specifically focused on people of Middle Eastern or North African (MENA) descent. Finally, Dr. Susan Jenkins from the US Department of Health and Human Services discussed Statistical Policy Directive (SPD) 15, and the proposals to change SPD 15. The session closed with a discussion moderated by Sarah Greene, Senior Advisor to the National Academy of Medicine.

During RAISE workshop VI, Susan Winckler, CEO of the Reagan-Udall Foundation, and Dr. Christine Lee-Flemming, Strategic Research Engagement Lead of the Office of Minority Health and Health Equity at the FDA, welcomed the workshop participants. During the session we heard four presentations. First, Dr. Carla Rodriguez-Watson, RAISE PI, summarized our previous RAISE workshops and their connection to workshop VI.  Next, Dr. Sarah DeSilvey (Gravity) discussed how project Gravity addresses interoperability and how race and ethnicity are critical for health equity use cases. Then, Ryan Argentieri (ONC) talked about the United States Core Data for Interoperability (USCDI) and the progress of adopting interoperability standards. Our final presentation was by Dr. Bradley Malin (Vanderbilt) who spoke on the balance between the need for data privacy and sharing data. After the presentations, our citizen voice Dr. La Keita Carter (Institute for HEALing) joined our speakers on the virtual stage to engage in a discussion led by Lenel James (BCBSA).

During the April 20 session, we heard four presentations. First, Dr. Carla Rodriguez-Watson, RAISE PI, summarized our previous RAISE workshops and their connection to workshop 8.  Next, Andrea Thoumi and Kamaria Kaalund (Duke-Margolis Center for Health Policy) discussed the LATIN-19 project and their work to bridge the health care gap for the Latino/a/X community in North Carolina. Then, from Dr. Michele Jonsson-Funk (University of North Carolina (UNC)-Gillings School of Public Health), we learned that missing race and ethnicity data are often not missing at random and can yield non-generalizable results, poor prediction for individuals not well-represented, and biased estimates of treatment effects due to failure to achieve exchangeability. After the presentations, our citizen voice Dr. Aaron Kamauu (Ikaika Health), and expert panel member Dr. Anne-Marie Meyer (UNC-Gillings School of Public Health) joined our speakers on the virtual stage to engage in a discussion led by Dr. Carla Rodriguez-Watson.

During the session, we heard three presentations. First, Dr. Carla Rodriguez-Watson, RAISE PI, summarized our previous RAISE workshops and their connection to workshop VIII.  Next, Dr. Tegan Boehmer (CDC) discussed how aggregating vs. disaggregating race affects measures of risk. Then, from Drs. Mohanty, Zickmund, and Naranjo (VA IDEAS-Informatics, Decision Enhancement & Analytic Sciences), we learned how the Veterans Health Administration (VHA) collects and updates race and ethnicity data. After the presentations, our citizen voice Rodney Samaco, PhD (Baylor College of Medicine) and Dionna Attinson (Aetion) joined our speakers on the virtual stage to engage in a discussion led by Dr. Carla Rodriguez-Watson.

During the session we heard four presentations. First, Dr. Carla Rodriguez-Watson, RAISE PI, summarized our previous RAISE workshops and their connection to workshop 9.  Next, Dr. Francisco De La Vega (Tempus) discussed the imputation of mutually exclusive race and ethnicity categories from genetic ancestry. Then, from Dr. Ali Mokdad (Institute for Health Metrics and Evaluation at the University of Washington), we learned about county-level stratifications in the U.S. and how to quantify disparities in health outcomes by race/ethnicity by building on their systematic effort to measure diseases, injuries, and risk factors by age and sex at the county level. Finally, from Dr. Krystal Tsosie (Arizona State University), we discovered that simply recruiting more Indigenous peoples into datasets is not going to solve the health equity problem and that we need to consider more structural power dynamics. After the presentations, our citizen voice Dr. Cleo A. Ryals (Flatiron Health) joined our speakers on the virtual stage to engage in a discussion led by Dr. Phil Febbo (Illumina, RAISE expert panel member and workshop champion).

During the session, we had one presentation from Dr. Alecia Clary, RAISE Co-Investigator (Evidence to Practice) on RAISE Roadmap: the barriers, facilitators, and solutions, towards the complete and accurate collection of race and ethnicity data. Our expert panel comprised of Sandy Leonard (COTA Healthcare), Dr. Oscar Benavidez (Massachusetts General Hospital), Dr. Elise Berliner (Cerna Enviza), and Dr. Rachele Hendricks-Sturrup (National Alliance Against Disparities in Patient Health) joined our virtual stage to react to the RAISE Roadmap.

During the session Dr. Alecia Clary, RAISE Co-Investigator (Evidence to Practice) presented the barrier-facilitator-solutions triads to address missing or misclassified race and ethnicity data in health care. Then, the webinar had two expert panels. The first panel, Considerations for Roadmap Implementation, was moderated by Dr. Carla Rodriguez-Watson and included Dr. Allen Hsiao (Yale School of Medicine and Yale New Haven Health), Dr. Rachele Hendricks-Sturrup (National Alliance Against Disparities in Patient Health) and Lenel James, MBA (Blue Cross Blue Shield Association). The second panel, Using the Roadmap to Elevate Race and Ethnicity Data in Health Care and Advance Community-Driven Data Governance and Inclusivity in Medical Product Development, was moderated by Susan Winckler, RPh, Esq. (Reagan-Udall Foundation for the FDA) and included Louis Cabanilla, MSc (Point32 Health), Dr. Bradley Malin (Vanderbilt University), and Dr. Krystal Tsosie (Arizona State University).  The webinar closed with a call to action presented by Dr. Carla Rodriguez-Watson.