NIAMS is dedicated to supporting research that will ultimately reduce or eliminate the disparity gaps in diseases and conditions within its mission, including development of approaches to enable access to health care that can contribute to every person’s ability to live long, healthy lives. Many of these diseases and conditions exhibit sex, racial, ethnic, and other disparities. NIAMS seeks to support research that not only considers and investigates disparities in terms of potential biological root causes but also examines the impact of socioeconomic factors and other social determinants of health on people from populations with health disparities as defined by NIMHD.
To understand the root causes of health disparities and address them directly, NIAMS must ensure that the research it supports appropriately includes a diverse group of clinical trial participants, such that there is sufficient representation of each population to conduct relevant analyses. Inclusivity in research generates more broadly applicable information and improves scientific understanding of the health and well-being of specific population groups. In addition to the NIH Policy and Guidelines on the Inclusion of Individuals Across the Lifespan , which helps ensure that NIH-funded clinical research includes individuals of all ages unless there is an appropriate justification to do otherwise, NIH designated people with disabilities as a population with health disparities . Efforts to identify and reduce health disparities and provide all Americans with access to participate in clinical and epidemiologic studies and receive health care should be considered for all NIAMS-funded research projects whenever possible.
NIAMS is interested in supporting research to identify data-driven approaches to remove barriers to health care access. One way of removing barriers is through community-based participatory research, which engages with communities directly. By becoming more involved with diverse communities, NIAMS investigators can better understand the challenges members of populations with health disparities, which, in turn, can better inform the quality of their research results. The institute remains interested in developing partnerships with research and professional societies and patient organizations to ensure that the voices of populations with health disparities are acknowledged and that NIAMS receives the vitally important feedback from these communities.
Examples of efforts under this topic include the following.
Strategy 6.1: Determining and Reducing Causes of Disparities
- Identifying the biologic, social, and environmental causes of diverse health outcomes in people from populations with health disparities who have diseases addressed by NIAMS. This could include:
- Exploring the interaction between health determinants, including the physical environment and chronic physical and social stressors, and the incidence and prevalence of disease.
- Assessing genetic risks for bone, joint, muscle, rheumatic and systemic autoimmune, and skin diseases across populations that include individuals of non-European ancestry.
- Identifying existing clinically used diagnostic tools or patient screening paradigms that are sources of health disparities.
- Distinguishing genetic factors from broad ancestral categorizations to mitigate the perpetuation of oversimplistic generalizations associated with health outcomes among racial and ethnic groups.
- Determining how populations with health disparities can benefit from proven interventions for diseases within the NIAMS mission through community engagement and implementation science efforts. This could include:
- Engaging with diverse communities by working with patient advocacy organizations, community organizations, and other stakeholders.
- Developing approaches for effective engagement of people from populations with health disparities and their communities to improve sustainable utilization of treatment and improve outcomes.
Strategy 6.2: Improving Research Participation by Groups That Experience Health Disparities
- Implementing community-based participatory research and other approaches to identify and remove barriers that contribute to the disproportionate underrepresentation of populations with health disparities in clinical trials and utilizing this information to broaden outreach and expand access, which may include designing relatable educational resources and offering appropriate incentives.
- Refining recruitment strategies to be more intentionally inclusive so that ancillary studies of treatment barriers and outcomes can be conducted.
The NIAMS Community Health Clinic (CHC)
The NIAMS CHC was established in 2001 as part of the NIAMS IRP Clinical Care and Research effort. The CHC’s goals are to better understand diseases such as RA and SLE and to gain insights about why these and other rheumatic diseases disproportionately affect women and some underrepresented groups. Based at the NIH Clinical Center in Bethesda, Maryland, the CHC is a clinical research site where NIAMS researchers provide rheumatology specialty care; gather health information to answer research questions about rheumatic diseases in certain groups of people; and provide scientifically based health information on rheumatic, musculoskeletal, and skin diseases.