Q and A: National Institute on Minority Health and Health Disparities

Yvonne Maddox, PhD

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This year marks the five-year anniversary of the establishment of the National Institute on Minority Health and Health Disparities (NIMHD). ASN Kidney News interviewed NIMHD Acting Director Yvonne Maddox, PhD, about the institute’s mandate to coordinate minority health and health disparities research at NIH.

Prior to becoming an NIH institute in 2010 with passage of the Patient Protection and Affordable Care Act, NIMHD was an NIH center—the National Center on Minority Health and Health Disparities. What impact did that change have on the institute’s focus, agendas, and programs?

It is exciting to look back on where the health disparities initiative has come and where it is going since passage of the Minority Health and Health Disparities Research and Education Act of 2000 (Public Law 106-525).

The US Department of Health and Human Services in 2000 designated the National Center on Minority Health and Health Disparities (NCMHD) to be a focal point for coordinating minority health and health disparities research at the NIH through “the conduct and support of research, training, dissemination of information, and other programs with respect to minority health conditions and other populations with health disparities.” Three legacy programs were established under this new law to expand upon research within NCMHD’s mission and build a diverse research workforce:

  • The Centers of Excellence (COE) for Research Education and Training, which establishes centers within colleges and universities to address health disparities through three main core areas: research, research training and education, and community engagement.
  • The Loan Repayment Program for Minority Health Disparities Research, which promotes research careers in basic, clinical, and behavioral research especially for young scientists underrepresented in research.
  • The Research Endowment Program, which promotes minority health and health disparities research capacity building at eligible COE funded by the Health Resources and Services Administration (HRSA) under sections 736 of the Public Health Service Act.

With passage of the Patient Protection and Affordable Care Act (Public Law 111-148) NCMHD was re-designated an institute, NIMHD, on March 23, 2010. The law transferred all of the responsibilities of the center to NIMHD and expanded eligibility for Research Endowment grants to also include eligible COE funded by NIMHD. The expanded eligibility criterion was incorporated in the NIMHD Research Endowment Program in FY 2010. With a focus on research capacity building, the NIMHD Research Endowment Program is unique to NIH. (Table 1).

Table 1

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You were recently appointed acting director of NIMHD. Tell us about your vision for the future direction of the institute.

As acting director of NIMHD, I have been working with the NIMHD staff and across the other NIH institutes and centers (ICs) to continue to advance our programs. With the support and collaboration of the many NIMHD intramural and extramural stakeholders, we have been leading a “visioning initiative” to better define minority health and health disparities issues and to identify the needs of the various populations who experience grave disparities in health status.

The science of health disparities research examines the etiology of health differences and research interventions to specifically identify and address the factors contributing to various health disparities. These factors, or health determinants, such as biological risk factors (including genetic and microbial), behavioral risk factors, social/economic factors, health systems, resiliency/protective factors, quality of life experiences, and environmental/physical factors affect various population groups in different ways and may contribute to differential consequences and unequal health burdens. Once the interactions and contributions of the various health determinants are understood through scientific research, tailored interventions can be designed, tested, and implemented widely to reduce the health burden. So we need to be mindful of population health and the science of behavioral change.

It is also important to recognize that minority health and health disparities are not the same, and that the terms must be properly defined. NIMHD is establishing a trans-NIH approach to define these critical areas. Health disparities are differences in the incidence, prevalence, mortality, and burden of diseases and other adverse health conditions that exist among specific population groups in the United States owing to social, economic, and environmental disadvantage. Minority health refers to health outcomes associated with a particular population group and is often correlated with race and ethnic differences.

What role does NIMHD play in fostering research in kidney disease health disparities? Does NIMHD collaborate with any other institutes or federal agencies on kidney-related studies?

NIMHD plays a significant role in supporting and conducting research in minority health and health disparities for all diseases and conditions that disproportionately affect health disparity populations (such as racial, ethnic, low socioeconomic status, and rural populations). This includes addressing research in kidney disease and disparities. Diabetes is one of the six health disparities areas NIH identified in its first strategic plan in 2001 as a high priority area, especially when it relates to social determinants of health, health promotion, and disease prevention.

Kidney disease impacts the health of underserved populations and its effects are disproportionately high. For example, African Americans are five times more likely to develop glomerular disease, such as focal segmental glomerulosclerosis (FSGS), than Caucasians. Glomerular disease remains a focus of the NIMHD research agenda through the COE Program, which supports biomedical, clinical, behavioral, and community-based participatory research; research training; and community outreach in minority health and health disparities. One NIMHD-supported study is investigating the progression of end-stage renal disease (ESRD) in African Americans, with a focus on the genetic risk factors for ESRD and the role of the sympathetic nervous system in the progression of kidney disease. NIMHD co-sponsored a conference with the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) on the potential biological and social impact of the discovery of genetic variations that appear to predispose African Americans to certain forms of kidney disease, including FSGS. Staff from NIDDK, NIMHD and other NIH ICs reviewed genetic, public health, ethical, and social implications of these new findings. With input from conference participants, NIMHD has now identified glomerular disease and nephrotic syndrome as priority research areas in our Notice of Participation in the NIH Parent R01 (investigator-initiated) Program Announcement.

NIMHD also supports diabetes research both in its extramural programs and in its intramural laboratory. An important focus is the testing of culturally tailored social support intervention for individuals of different ethnic backgrounds with type 2 diabetes. The NIMHD intramural program continues to study health disparities in diet and eating habits and their influence on obesity as a contributing factor to diabetes development in children and young adults.

How do institute programs help trainees and researchers balance the need for addressing health disparities with regard to both prevention and treatment of disease?

The institute has developed and implemented a full range of programs from the prevention of disease to the comparison of different treatment regimens. While prevention has the potential for creating a windfall in improving the health of individuals, determining the best treatment interventions to reach underserved populations is critical to improving the lives of all Americans. For example, NIMHD is collaborating with other institutes and centers to support research to develop, adapt, and test the effectiveness of health promotion and disease prevention interventions in many community settings, including the American Indian and Alaska Native communities. Our Community-Based Participatory Research Initiative establishes collaborations with the community to identify health priorities and implement interventions designed to improve health. As true partners, the community embraces an “ownership” role in the research and helps to develop ways to disseminate and implement the evidence-based information.

Health disparities research includes basic, applied, clinical, social and behavioral, and translational research. NIMHD supports programs that provide opportunities for research training and career development in all of these areas. A new focus for the institute is population health and health disparities. The programs in this priority area also increase the evidence base for interventions to reduce health disparities and seek to improve the quality and length of life for all populations (Table 2).

Table 2

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As part of NIMHD’s role in coordinating and facilitating health disparities research across NIH, we continue to work with the other ICs to conduct scientific portfolio reviews and evaluations to identify priority areas that include efforts aimed at disease prevention, early detection, risk reduction efforts, and targeted treatment interventions to improve population health.

What strategies for attracting trainees into health disparities research have you found successful at NIMHD?

NIMHD is one of the lead NIH institutes to conduct and support research training particularly in the field of minority health research and health disparities research.

A successful program for recruiting trainees into research, leading to a reduction and elimination of disparities in population health, has been the NIMHD Loan Repayment Program (LRP) that offers loan repayment awards of up to $35,000 per year to health professionals with doctorate degrees (e.g., MD, PhD, DrPh) while conducting health disparities or clinical research in non-federal research settings for at least two years. Since its inception, the NIMHD LRP has supported more than 2400 scholars, many of whom have gone on to receive R01 funding from NIMHD and other NIH ICs, including the NIDDK.

The LRP has two tracks:

  • The NIMHD Loan Repayment Program for Health Disparities Research supports qualified health professionals engaged in basic, clinical, behavioral, social sciences, or health services research addressing health disparities. At least 50% of recipients must be from a health disparity population, as required in the Minority Health and Health Disparities Research and Education Act of 2000 (P.L. 106-525).
  • The NIMHD Extramural Clinical Research Loan Repayment Program for Individuals from Disadvantaged Backgrounds supports health professionals from financially disadvantaged backgrounds who conduct clinical research. Clinical research involves direct patient interaction and usually studies the origins or effects of a disease or health condition.

Another recruitment initiative has been to encourage participation in the NIH Diversity Supplement Program. This program provides an opportunity for grantees, including those working in the health disparities field, to apply for administrative supplements to allow support for trainees/early career investigators to work within the scope of the parent health disparities research project.

NIMHD also offers a competitive, annual two-week intensive, on-site training in the principles and practices of health disparities research through the NIMHD Translational Health Disparities Course held on the NIH campus in Bethesda, MD. Since its launch in 2010, roughly 264 scholars have gone through the course. The course has Continuing Medical Education accreditation through Johns Hopkins University.

As an additional training mechanism, NIMHD staff provide information on institute programs at various meetings and workshops across the US and abroad throughout the year.

Are there plans for offering mentored career development awards (i.e., K awards) from the NIMHD?

NIMHD believes early training programs may be the best models to address the immediate pipeline issues. The institute is investing in the National Research Service Award Institutional (T32) and individual fellowship (F31, F32) training programs in FY 2015 and FY 2016. Specifically, we will be seeking to develop a training portfolio in population health science. Working with the NIH Office of Behavioral and Social Sciences Research (OBSSR), NIMHD will co-sponsor an Institute of Medicine Workshop on Training in Interdisciplinary Population Health Science: A Vision for the Future, Institute of Medicine Roundtable in June 2015.

Population health science is an interdisciplinary science that develops an integrated understanding of the determinants of health and health disparities, and therefore holds promise for advancing the science of health disparities. It is essential that other ICs recognize that training in population health is critical to the science of health disparities. Therefore, we are pleased that OBSSR is advancing a trans-disciplinary approach to this area of training.

In addition to attracting trainees, what insights can NIMHD offer regarding actively fostering the careers of young faculty?

Providing structured mentoring and professional development can help foster the careers of young faculty. Most important is protected time for junior faculty. Developing bridge-plans for moving successful postdoctoral researchers into junior faculty positions and junior faculty into tenured track positions is important, as is developing a schema to help junior faculty choose mentors and institutions that support them and providing visibility to the success stories of professional advancement of those early career faculty members.

How does the institute support training of a diverse research workforce?

NIMHD plays an active role in the three new NIH Common Fund initiatives that support programs with the potential to dramatically affect biomedical research by achieving a set of high impact goals within a defined time frame. In these interrelated initiatives, awardees will work together as part of the Diversity Program Consortium ( Table 3).

Table 3

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Another catalyzing, trans-NIH initiative that NIMHD supports is the Big Data to Knowledge (BD2K) program, which aims to facilitate broad use of biomedical big data, develop and disseminate analysis methods and software, enhance training for disciplines relevant for large-scale data analysis, and establish centers of excellence for biomedical big data. NIMHD has a lead role on the BD2K Enhancing Diversity in Biomedical Data Science research program (RFA-MD-15-005). The over-arching goal of this education grant program is to support educational activities that enhance the diversity of the biomedical, behavioral, and clinical research workforce. To achieve this goal, this Funding Opportunity Announcement will support creative educational activities with a primary focus on research experiences and curriculum development.

Are there programs that are under-utilized that students and young investigators should know about?

NIH offers a diverse range of research training and career development programs for all degree levels and for early career investigators. This includes Summer Internships in Biomedical Research, the Biomedical Engineering Summer Internship Program, the Introduction to Cancer Research Careers program, the Summer Internship Program for Veterinary Medical Students, and the Recruitment and Training Program for Under-Represented Populations. Training also includes the Post-Baccalaureate Intramural Research Training Award program and the NIH Academy.

Many of the NIH institutes have their own special training programs, which are often discipline specific. However, one program that is not well known is the NIH intramural Medical Research Scholars Program (MRSP), which is co-funded by NIMHD, and engages scholars in a one-year research intensive, mentored basic, translational, or clinical research project in an area that matches their personal interests and career/research goals. This is a comprehensive residential research enrichment program for medical, dental, and veterinary students. The program highlights understanding of clinical protocol development and the conduct of human subjects’ research, focusing on clinical teaching rounds with patients participating in research protocols at the NIH Clinical Center, and academic leadership development.

What do you consider the greatest research opportunities of NIMHD in the short and long-term?

NIMHD science spans fundamental understanding of the basic biological processes and epigenetic mechanisms associated with health disparities to applied, clinical and translational research, and population science studies and interventions that seek to address disparities. Our existing knowledge provides a useful basis for critical scientific activities and innovation needed to address the research and population health needs in transition, but it falls short of integrated solutions to eliminating health disparities. An objective of our current health disparities science visioning process is to focus on these unanswered research questions and processes to address racial/ethnic minority health and eliminate health disparities.

Following are NIMHD research goals to build upon current observations/advances to mature the field of health disparities research:

  • Utilize multidisciplinary systems approaches and encourage team science;
  • Identify rigorous scientific methods/tools, measurements, metrics, etc.;
  • Identify gaps in research areas and determine priority areas for action;
  • Establish some basic foundations or principles for the health disparity community to consider when addressing health disparities;
  • Create training opportunities to develop a robust health disparities and population health research workforce; and
  • Collaborate with federal and non-federal research organizations to identify partnerships in critical areas to more effectively and efficiently advance the field of health disparities research and population health.

NIMHD will continue to collaborate with the other NIH ICs to develop a health disparities research framework to explore the following questions:

  • What are some core attributes and expectations for a transformative discipline of health disparities science?
  • What are some of the key research questions that should be given high priority on a health disparities research agenda, because knowledge in those areas might inform translation efforts that could have a high impact on reducing health disparities?
  • Which scientific disciplines and/or approaches are needed to address critical knowledge gaps in health disparities research?
  • What will be the basic, applied, clinical, and translational health disparities research questions to address?
  • What research tools, methods, and approaches are needed to adequately address health disparities science?
  • What are the infrastructure, resources, training, and capacity-building needs and opportunities?

Among the important scientific areas expected to advance health disparities research are: model systems; life-course science; the science of behavior change; and population science, including increasing the recruitment and retention of diverse populations in clinical trials, while being mindful that effective clinical studies must consider all ethnicities, as exclusions can endanger populations; along with precision medicine; behavior and cognitive development, with a focus on mental health; the analysis of big data; and the translation, dissemination, and implementation of interventions.