NIAMS Launches Program To Address Health Disparities
By Kelli Carrington
The health of a nation depends on the health of its communities. Recognizing this, the National Institute of Arthritis and Musculoskeletal and Skin Diseases is launching the first phase of its "Health Partnership Program An NIAMS Diversity Outreach Initiative," a new program to address the health disparities in rheumatic, musculoskeletal, muscle, bone and skin diseases that exist in minority communities.
The initial phase of the Health Partnership Program (HPP) has begun as a model community-based program in the African American community in the metropolitan Washington, D.C., area. Presently, the focus of the program is rheumatic diseases. Eventually, the program will address health disparities in musculoskeletal, muscle, bone and skin diseases among African American and other minority communities across the country.
NIAMS staff met with community leaders and representatives in February to gain insight into the community's needs regarding rheumatic diseases. Participants identified ways to provide health education and patient care to the community, as well as ways to increase the number of African American investigators. Already, results have emerged: a draft health promotion plan has been developed to guide local HPP activities for this particular community.
Plans are also under way for a new rheumatology clinic to be located in a centrally accessible area of Washington, D.C. The clinic will provide additional access to quality health care services for patients. Also, it will increase training opportunities in patient care and research protocol development for African American investigators.
Through partnerships with state and local organizations, the HPP expands the institute's public health education, clinical investigation and investigator recruitment efforts to minority communities disproportionately affected by these chronic diseases.
Groups such as African Americans, Hispanic Americans, American Indians and Alaskan Natives, and Asian Americans experience many of these diseases both in increased numbers and increased severity. Compared to the general population, the prevalence of systemic lupus erythematosus (SLE), an autoimmune disease that can range from a mild skin rash to major organ failure, is higher among African Americans and Hispanic Americans. These groups also experience more serious complications of SLE. African Americans also have higher rates of hip and knee osteoarthritis: a degenerative joint disease that causes pain and joint damage. Scleroderma, an autoimmune disease that causes hardening of the skin and can affect major organs, occurs with greater frequency in Choctaw American Indians. Asian American women experience rheumatoid arthritis at rates higher than the general population as well.
To address such disparate health conditions, the HPP concentrates on four key areas: public health education, patient care, access to clinical investigations, and recruitment to research careers. Collaboration with state and local organizations that work with or represent minority communities helps to ensure that the program's strategies are designed to meet community needs.
Public education activities increase awareness of the program's targeted diseases. Patient care emphasizes early detection and treatment of the targeted diseases and evaluates subspecialty care such as rheumatology in the minority community. This also includes assessment of the natural history of disease in the community. Opportunities to participate in clinical investigations expand patients' access to current studies for the treatment and prevention of chronic disabilities associated with the program's targeted diseases. Specific strategies are planned to increase the number of underrepresented minority investigators in the biomedical research fields related to the diseases. These include developing science education curricula as well as training and mentoring programs for students, teachers and researchers.
The patient representatives group, a component of the HPP, reviews a variety of topics including health education information and clinical research protocols. They also support and encourage patients who are new to research protocols. The group is made up of people who are participating in the institute's clinical investigations. Members help ensure that the research and education programs are tailored to the needs of the patients who participate in clinical investigations.
The intramural research program is also establishing a newsletter as a result of the group's activities so far. This will increase awareness of ongoing research activities. The newsletter will include information on clinical investigations, news related to patient care and articles on intramural program staff. Additionally, a new NIAMS bookmark will be designed as a quick, easy reference to the institute's information services.
By working more closely with communities to identify culturally sensitive implementation strategies, NIAMS hopes to reduce the gaps in health disparities for communities disproportionately affected by the diseases in its research portfolio.
The HPP operates under the direction of Dr. Peter E. Lipsky, the NIAMS scientific director. He joined the institute in September 1999.
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