The Justice, Equity, Diversity, and Inclusion Outreach Group (JEDI) Corner is a regular component of Amstat News in which statisticians write about and educate our community about JEDI-related matters. If you have an idea or article for the column, email JEDI Outreach Group member Cathy Furlong.

Stephanie Cook is the director of the Attachment and Health Disparities Research Lab at the New York School of Global Public Health. Currently, the AHDL is made up of about 20 undergraduate, graduate, and postdoctoral fellows. Follow Stephanie on Twitter at @DrStephanieCook.

Erica P. Wood is a third-year doctoral candidate at the New York University School of Global Public Health. Her primary research lies in examining how intersecting forms of discrimination (e.g., racial/ethnic-related, gender identity–related) influence health and health behaviors among sexual and gender minorities. Follow Erica on Twitter at @ericapwoodMPH.

 
 
The National Institutes of Health is investing resources in constructing secure data repositories in which researchers and community members are able to use publicly available data. One such program is the NIH’s All of Us Research Program, which has expanded its Researcher Workbench to include data contributed by more than 329,000 participants, about 80 percent of whom are from communities that have been historically underrepresented in biomedical research. The Researcher Workbench now includes the following:

• Survey data for 329,000+ participants (e.g., lifestyle factors, access to care, medical history, data from nearly 100,000 participants on their experiences during the COVID-19 pandemic) 
• Physical measurements for 267,600+ participants (e.g., blood pressure, heart rate, BMI) 
• EHR data for 214,200+ participants (e.g., demographics, visits, diagnoses, and medications data harmonized according to the program’s common data model)
• Fitbit data for 11,700+ participants who linked their personal data to their All of Us accounts 
• Whole genome sequences for 98,600+ participants

The latest data release includes a 42 percent increase in participant Fitbit records on activity levels and heart rate, making it one of the largest and most diverse publicly available sets of digital health technology data available. Additionally, the update includes an ample collection of survey data gathered from late 2020 through early 2021 on participants’ daily life, health, and well-being throughout the COVID-19 pandemic. Building on responses provided in similar surveys from May to August 2020, this data offers a longitudinal view of the impact over more than eight months of this global health emergency and represents the biggest infusion of mental health data into the Researcher Workbench so far. 

More than 1,000 researchers across more than 309 institutions have already begun using the All of Us Researcher Workbench to conduct rapid, hypothesis-driven studies and build new methods for the future. The All of Us Research Hub also offers the ability to explore aggregated, publicly available data in the program’s Data Browser and read about current projects underway in the Projects Directory and Spotlights. Further, there are tutorials, office hours for anyone who has questions, and staff available to help onboard new researchers to the workbench.

We are in an era in which large data repository systems like All of Us continue to emerge and enhance a researcher’s capability to capture and analyze information in many ways. However, even with substantial resources being poured into promoting the use of a resource such as All of Us, barriers remain to enabling and empowering underrepresented researchers to take advantage of these data repository ecosystems, including usability and training.

To achieve equity, the utility of the data sources must not only be accessible, but also usable. The All of Us Research Program has collaborated with historically Black colleges and universities (e.g., Xavier University of Louisiana, Tuskegee University) to promote the use of the data to traditionally underrepresented minorities. In addition, the program supports a researcher ambassador network that enables researchers from diverse backgrounds to create and implement strategies (e.g., webinars) to increase the representation of the All of Us Researcher Workbench.

However, statistical analysis programs such as R and Python are the foundation by which research is conducted on many of these large data repository systems. These programs often present usability and access barriers when programs such as Stata or SPSS are preferred or taught. With limited ability to analyze the data, many of these efforts to promote All of Us as a tool to support underrepresented researchers may have limited success. Coupling engagement efforts with the promotion of creating diverse project teams that include statisticians, content experts, and community partners—when applicable—is one potential solution.

Project teams used throughout the health sciences and beyond are a means to creating a cohesive team that can bring an important scientific idea to fruition through an integrative and, many times, innovative process. For instance, the William T. Grant Foundation supports research that aims to reduce inequality in the academic, social, behavioral, and/or economic outcomes of young Americans. The foundation seeks to support a diverse array of scholars in terms of socioeconomic background, race/ethnicity, etc. to best address the effect of inequality among youth. Moreover, the foundation has their Interdisciplinary Research Leaders Program, in which individuals from diverse socioeconomic, racial/ethnic, and disciplinary backgrounds form teams to research pressing issues with respect to health inequities. Such an approach enables a multi-disciplinary perspective while providing support for underrepresented researchers to use and improve upon their skills. Supporting this type of approach could alleviate some of the limitations around statistical software or statistical expertise and promote multidisciplinary collaboration.

Beyond All of Us, we must—as a society—broadly invest in meaningful training for our students and early-career faculty from underrepresented communities. All of Us has collaborated with its partners to create mentorship opportunities for students from diverse backgrounds with the aim of supporting these students in developing the statistical and methodological skills to use this and similar data sources; however, more is needed.

Programs such as Columbia University’s BEST Diversity Program or New York University’s Pipelines into Quantitative Aging Research Summer Program have shown that we must start early and provide students from underrepresented backgrounds with much financial and tangible support.

Shifting the paradigm is not easy and requires considerable time and resources. As statisticians, it is important that we get involved, spread the word, and do the work. The All of Us Research Program and its Research Workbench continue to push the envelope to make those paradigm shifts.

Accordingly, we should commit ourselves to supporting underrepresented communities at every stage of their educational and professional journeys. By providing financial and educational resources to these communities in addition to important data sources, we can foster multidisciplinary research endeavors that aim to reduce health inequities.