About Us

Community Outreach

Health Partnership Program: Progress, Opportunities, And Challenges
Summary

February 25-26, 2002 (historical)
Bethesda, MD

The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Health Partnership Program (HPP) is a collaborative community-based effort directed at developing research programs to understand and address health disparities in rheumatic and musculoskeletal diseases. The NIAMS convened a meeting to foster interchange among NIAMS Community Partners, academic and community experts from a variety of settings, and NIAMS staff involved in the HPP. This meeting took place on February 25-26, 2002, in Bethesda, MD, 2 years after the initiation of the HPP. [See appendix A for the list of invited participants.]

The goals of the meeting were (1) to review the current state of the HPP, (2) to learn about other programs and experiences that are relevant to the HPP, and (3) to begin to articulate 5- to 10- year program goals addressing the HPP program areas: public health education, patient care, access to clinical studies, and recruitment to research careers, as well as plans whereby these aims can be achieved.

On the first day, Peter E. Lipsky, M.D., NIAMS, and Barbara B. Mittleman, M.D., NIAMS, charged the meeting attendees with the responsibility and opportunity to provide innovative and novel contributions to the HPP process over the coming years.

The program began by focusing on the current state of the HPP. The first speaker was Kelli Carrington, M.A., NIAMS. Ms. Carrington discussed the community outreach effort; the community-based activities and presentations; the large group meetings involving up to 60 partner organizations and individuals drawn from the greater Washington, D.C., African American and Hispanic/Latino communities; and the HPP document drafted in conjunction with the community partners and the NIAMS.

Dr. Mittleman discussed the NIAMS Community Health Center (CHC), which opened in July 2001 as (1) a rheumatology clinic; (2) a training site for fellows, residents and students; (3) a recruitment site for clinical protocol enrollment; and (4) a coordinating site for career development activities in biomedical research and health disparities. Data on the first 6 months of operation were presented. Patients attending the clinic were mainly African American and Hispanic/Latino. There were more women than men, and the average age of African American patients was significantly higher than that of the Hispanic/Latino patients. These data closely mirror the demographics of the community immediately surrounding the CHC. A wide variety of clinical symptoms and diagnoses were represented. Patients were most commonly referred by health care providers or community contacts.

Gwen Coleman, M.S., D.C. Family and Child Services and a member of the African American Community Partners Core Group, discussed the HPP from the perspective of a community member. She discussed initial concerns and mistrust in dealing with NIH/NIAMS, and stated that the openness, the responsiveness, and the attention to issues of cultural differences and sensitivities of the NIAMS staff have been critical to the success of the program.

Maite Arce, Self Reliance Foundation ~ Acceso Hispano and a member of the Hispanic/Latino Community Partners Core Group, spoke about the process of working with the NIH/NIAMS on the HPP, the needs and concerns of the Hispanic/Latino community, and impressions of the CHC based on her personal experience and comments from community members. She, too, felt that the NIAMS has been successful in working with the Spanish-speaking community in a culturally sensitive manner.

Gregory Dennis, M.D., NIAMS, discussed the clinical activities at the CHC and the training of fellows in community rheumatology there. He saw the potential of the CHC as a recruitment site for patients to enroll in NIAMS and other NIH institute clinical protocols, and as a stimulus for community members to enter medicine and biomedical research in a variety of capacities.

Outside experts shared information and experiences about programs in other communities. Oretta Mae Todd, Ph.D., R.N., Arthritis Foundation - Detroit Chapter, described arthritis education and exercise programs in the African American community in Detroit. She spoke about the barriers to initiating and continuing such programs, the merits of academic affiliation (in this case with the University of Michigan), and the cultural aspects of their local community organizations and alliances. She emphasized the importance of the church as an entry to the African American community.

Kate Lorig, R.N., Dr.P.H., Stanford University, discussed outreach education efforts in arthritis and chronic disease self-management programs in the Hispanic/Latino community in California. She mentioned some of the specific cultural determinants influencing the success of their programs. She also emphasized the need to tailor programs to communities and to develop the means for programs to become self-sustaining.

The afternoon sessions focused on disparities in recruitment to research careers, disparities in access to health education, and more focused means for accomplishing HPP goals.

Nigel E. Harris, M.D., Morehouse University School of Medicine, spoke about recruiting minority students to careers in medicine and research, and more specifically to careers in rheumatology. He underscored the value of personal mentoring relationships, exposure to specific occupations and scientific fields, and exposure to individuals who can be role models for minority students.

Leigh Callahan, Ph.D., University of North Carolina, spoke about the National Arthritis Action Plan, a multiagency, multiorganization national plan for arthritis assessment and education that has been implemented across the United States. Dr. Callahan emphasized the value of standardized methods of assessment of arthritis incidence and prevalence; the need to be able to assess disability, outcomes, and response in communities of differing ethnic backgrounds; and the need for arthritis education.

Gwenyth Wallen, R.N., Ph.D., NIH Clinical Center (CC), presented a preliminary plan for a research project to be conducted at the NIAMS CHC in collaboration with the CC. This project will examine acculturation, health beliefs, and behaviors regarding arthritis and complementary and alternative medicine (CAM) usage in the Hispanic/Latino and African American patients attending the CHC. She presented the rationale for the project and the methods planned. The discussion emphasized focus group input in the construction of the assessment instruments. Meeting participants suggested ways to gather and use the community's input on the proposed project.

The final presentations of the day were directed toward translating the HPP's current accomplishments into a long-term plan for the program and its related activities.

Matthew H. Liang, M.D., M.P.H., Harvard Medical School, spoke about the difficulties of community-based research, particularly with respect to funding, and establishing continuity between community contacts and institutions and the research team. Sustainability was seen as a major issue of any such program. He gave examples from the War on Poverty and the Office of Economic Opportunity, which started Neighborhood Health Centers in the 1960's, and the continued challenges they face. East Boston Health Center, a center that had become a successful model for community-based research, has had serious financial setbacks.

Lawren Daltroy, Dr.P.H., Harvard School of Public Health, discussed three evaluation methods and strategies: 1) formative evaluation is an iterative, bootstrapping kind of process of repetitive trial and error that happens in the practice of working out a program and is important to document; 2) process evaluation presupposes an established and operating program which serves as the base from which patient care, research questions, and community relations can be assessed; and 3) outcome evaluation generally requires a moderate to long period of time for assessment of the distal effects of a program or intervention. Examples would include improvements in health outcomes as a result of the clinic and the development of specific treatments or educational activities. A full evaluation program would include elements of all three modes and would encompass the setup or establishment phase, the operation of the program, and the long-term effects of the program.

A dinner session that included meeting attendees, as well as additional members of the HPP community partners, was held on February 25. Keynote speeches were presented by Carlos Ugarte, M.P.H., Deputy Vice President for Health, National Council of LaRaza, and Michael S. A. Richardson, M.D., Senior Deputy Director, D.C. Department of Health. Mr. Ugarte discussed ways in which the need to understand and reduce health disparities can be addressed synergistically through community-based research and the NIH-community partnerships, thereby meeting many shared goals. Dr. Richardson spoke about the significant health needs of District of Columbia residents and how the NIH and local agencies can work together to foster improvements in health disparities and better health outcomes for the local community.

The second morning of the meeting was directed at developing an intermediate and long-term set of directions in which the HPP can move, and to assess the resources needed to do so. Richard D. Brasington, M.D., Washington University School of Medicine, presented information on an arthritis education and exercise program implemented in the state of Missouri, with state funding and commitment and with local academic and community support. Research activities have been added to the program, which constitutes a laboratory for evaluating community needs and for determining the effectiveness of programs, interventions, and treatment outcomes.

The final hours of the meeting were spent in work group sessions in which all participants had the opportunity to contribute to plans for future HPP programs and activities. The session facilitator, Marcia Carlyn, Ph.D., divided everyone into three working groups, each with a distinct focus and organizing questions to guide the discussions. The groups focused on issues relating to (1) clinical care and clinical research, (2) public health education, and (3) career development.

The meeting concluded with thanks from the organizers to all of the participants for their thoughtful and insightful participation in the meeting. Plans for next steps include circulation of this summary to all of the HPP meeting participants and community partners, and development of a conceptual plan to guide the next phase of HPP activities. Plans are underway for the NIAMS CHC First Anniversary Celebration to be held in early summer 2002.