25 Jul NIH Funded Research Still Lacks Full Ethnic Equity
MedicalResearch.com Interview with:
Lan N. Đoàn, MPH CPH
PhD Candidate, School of Social and Behavioral Health Sciences
College of College of Public Health and Human Sciences
Oregon State University, Corvallis
MedicalResearch.com: What is the background for this study?
Response: There is a prevailing stereotype that Asian American, Native Hawaiian, and Pacific Islander (AA/NHPI) populations are a model minority group – healthier than all other racial/ethnic groups. As a result, health researchers often consider AA/NHPI so similar that their data is typically grouped together which masks their cultural and health differences. However, AA/NHPI populations represent more than 50 countries or cultures of origin and 100 different languages and have unique health needs and cultural preferences. Prior research has found minimal financial investments in AA/NHPI populations by federal agencies and philanthropy, even though AA/NHPI individuals represent more than 5.0% of the total US population and are the fastest-growing racial/ethnic group in the United States.
The purpose of study was to conduct a review of clinical research funded by the National Institutes of Health (NIH) for AA/NHPI populations and to determine the level of NIH investment in serving these populations. We queried the NIH Research Portfolio Online Reporting Tools Expenditures and Results (RePORTER) system for extramural AA/NHPI focused clinical research projects conducted in the United States from January 1, 1992, to December 31, 2018. We included clinical research funded under research project grants, centers, cooperative awards, research career awards, training grants, and fellowships was included, with an advanced text search for AA/NHPI countries and cultures of origin.
MedicalResearch.com: What are the main findings?
Response: We found disproportionate long-term investments from the NIH to eliminating health disparities in AA/NHPI populations. We found 529 clinical research studies that included AA/NHPI participants over 26 years. Funding of these projects ($775 536 121) made up 0.17% of the overall NIH expenditures ($451 284 075 000) between 1992 and 2018. The proportion of the total NIH budget for AA/NHPI projects has only increased from 0.12% before 2000 to 0.18% after 2000.
Almost 60% of the total AA/NHPI projects (n = 303) mentioned an AA/NHPI subgroup (e.g., the project abstract explicitly mentioned Vietnamese participants). Among these projects, the Asian American subgroups most represented were Chinese (n = 133), Vietnamese (n = 48), Korean (n = 42), Filipino (n = 41), and Japanese (n = 37). For NHPI participants, Native Hawaiian (n = 33), Samoan (n = 7), Marshallese (n = 4), Chamorro (n = 3), and Tongan (n = 3) subgroups were reference most often.
Furthermore, there was a lack of range in the investment in terms of NIH institutes and centers and geographical regions. More than half of the research funding was concentrated in 3 NIH institutes and centers. Funding was concentrated in organizations located in California and Hawaii, with negligible investment toward states with the fastest-growing AA/NHPI populations. The current investment patterns, or lack thereof, could result in worsening health disparities in AA/NHPI populations because of prolonged disparate funding of health research.
MedicalResearch.com: What should readers take away from your report?
Response: We found that 0.17% of the overall NIH budget was allocated to 529 AA/NHPI related clinical research projects over 2 decades. The funding allocated to total AA/NHPI research remained less than one half of a percent for both the overall NIH budget and clinical research budget. We found that AA/NHPI populations continue to be classified as a homogeneous group and there was unequal representation of AA subgroups. Native Hawaiian and Pacific Islander participants were almost absent from the grants found in our search. Eliminating health disparities requires that there is sufficient AA/NHPI data to understand what is happening and to intervene in a meaningful way.
Findings from our study have implications for future administrative and programmatic efforts, namely
- (1) intentional use of funding opportunity announcements,
- (2) workforce diversity
- (3) data disaggregation with data harmonization,
- and (4) access to data.
MedicalResearch.com: What recommendations do you have for future research as a result of this work?
Response: Future studies should evaluate research rigor of funded projects, such as the proposed enrollment of racial/ethnic minority participants as comparison with enrollment reported in publications. Funding trends should be assessed to document whether they have kept pace with population growth and whether they are addressing and anticipating health disparities. Other federal agencies and philanthropic organizations should document their funding for AA/NHPI groups.
MedicalResearch.com: Is there anything else you would like to add?
Response: We acknowledge that the NIH and other agencies have funded and are currently funding health disparities and minority health research. There is a realization that diverse representation within research programs is critical. However, inclusion of historically underrepresented communities in research and data collection requires meaningful recruitment and outreach, oversampling, and disaggregated data that provides more information than just summary statistics. We need to ask questions about what communities are being excluded from the research and why they are persistently excluded. Diversity and inclusion extend beyond research programs – it also requires us to re-examine the priorities of organizations and the diversity of review panels, investigators, training programs, and research projects.
Additionally, prior research has shown there are systematic barriers for investigators conducting health disparities and minority health research – particularly for investigators of color. Beyond funding agencies, we need to consider what institutions (i.e. universities and hospitals) are doing to promote the diversity, inclusion, and equity in the workforce. We hope that this study will continue the conversation on how we can achieve health equity.
I am currently funded by National Institute on Aging of the NIH under award R36AG060132 that supports my dissertation research at Oregon State University. The NIH had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.
Đoàn LN, Takata Y, Sakuma KK, Irvin VL. Trends in Clinical Research Including Asian American, Native Hawaiian, and Pacific Islander Participants Funded by the US National Institutes of Health, 1992 to 2018. JAMA Netw Open. Published online July 24, 20192(7):e197432. doi:10.1001/jamanetworkopen.2019.7432
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