You are here:
- Contact Us
- Mission & Purpose
- Employment Opportunities
- NIAMS Budget
- Legislation & Congressional Activities
Health Partnership Program
Health Promotion Plan
Reviewed November 18, 2009 (historical)
Local Health Partnership Program
A NIAMS Diversity Outreach Initiative
Metropolitan Washington, D.C., Area
- Description of the Institute and its Mission
- Overview of the NIAMS Health Partnership Program
- Local Health Partnership Program Plan - Metropolitan Washington, D.C., Area
- Purpose - Local Health Partnership Program
- Goals and Objectives - Local Health Partnership Program
- Public Health Education
- Patient Care
- Access to Clinical Investigations
- Recruitment to Research Careers
- Community Focus
- Feedback from Community Leaders and Representatives
- Understanding the Community
- Gathering Community Input for Health Education/Promotion and Medical Research
- Community-Level Resources
- Partnering with Community-Based Organizations
- Community Resource Needs
- Resource Needs for Public Health Education (including patient education)
- Resource Needs for Patient Care
- Resource Needs for Access to Clinical Investigations
- Resource Needs for Recruitment to Research Careers
- Distribution of Resources
- Appendix - Community Partners
The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) is a component of the National Institutes of Health (NIH), under the U.S. Department of Health and Human Services (DHHS). The NIAMS leads the Federal effort on research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases, the training of basic and clinical scientists to carry out this research, and the dissemination of information on research progress to improve public health. The NIAMS supports and conducts basic, clinical, and epidemiologic research and research training at universities and medical centers throughout the Nation, as well as through the Intramural Research Program at the NIH campus in Bethesda, Maryland, which is focused on diseases affecting millions of Americans.
As part of its efforts to address the health disparities
that exist among minority groups for rheumatic, musculoskeletal, and
skin diseases, the NIAMS is establishing the Health Partnership Program - A
NIAMS Diversity Outreach Initiative (HPP). The HPP is aimed at reducing
the morbidity and mortality associated with these diseases and their
complications, which disproportionately affect African Americans, Hispanics/Latinos,
American Indians/Alaskan Natives and Asian Americans/Pacific Islanders.
Many questions remain about the reasons for health disparities, the nature
of health disparities and the effects of health disparities among minority
communities. Through the development of the health promotion plan and
associated activities, the NIAMS will be poised to contribute to the
effort to find the answers to these questions to the ultimate benefit
of the community, a goal consistent with our mission. The HPP concentrates
on four key areas:
(1) public health education,
(2) patient care,
(3) access to clinical investigations, and
(4) recruitment to research careers.
The underlying theme of the HPP is collaboration with community leaders and representatives as well as organizations serving communities that are disproportionately affected by diseases of the joints, muscles, bones, and skin. Initially, the focus will be on rheumatic diseases such as arthritis and lupus in the African American and Hispanic/Latino communities in the metropolitan Washington, D.C., area. In the next stages, the local HPP will address health disparities among the Institute's other disease areas and additional multicultural communities. We will plan national efforts as well. This document outlines the purpose, goals, and objectives for the initial local efforts of the HPP. It includes suggestions for effective outreach to the African American and Hispanic/Latino communities in the metropolitan Washington, D.C., area. Community Partners, that is, community-based organizations, health organizations, community leaders, faith-based groups, and other representatives of multicultural communities in the metropolitan Washington, D.C., area, have been integral to the development, implementation, and evaluation of this document [see the Appendix for a list of the HPP's Community Partners].
The initial local HPP focuses on the collaborative development, dissemination, and delivery of resources (i.e., materials and services) on rheumatic diseases for the African American and Hispanic/Latino communities in the metropolitan Washington, D.C., area.
The purpose of the initial local HPP is to work with community leaders and organizations representing the African American and Hispanic/Latino communities in the metropolitan Washington, D.C., area to develop a model community-based program that will begin to address the disparities in rheumatic diseases in these communities. The HPP will provide access to current scientifically based health information and quality health care by offering preventive and treatment services.
Following is an overview of the goals and objectives for the initial local HPP in the metropolitan Washington, D.C., area. All of the goals and objectives involve working with organizations that have direct access to or a part of the targeted communities. Timelines and specific measures for outcomes have been omitted from this document, but are key to the success of any health promotion program. We are preparing the operational outline of the plan, which includes such measures.
Increase awareness and understanding of rheumatic diseases.
Develop and disseminate scientifically based public health and patient education information tailored to the needs of the community.
- Increase awareness of the importance of early detection and treatment of rheumatic diseases in preventing complications and chronic disabilities associated with these diseases.
- Evaluate the impact of providing access to medical care for patients who have or suspect they have a rheumatic disease.
- Evaluate the impact of providing medical care to patients who have a rheumatic disease.
- Develop and disseminate scientifically based public health and patient education information on the treatment and prevention of complications and chronic disabilities associated with rheumatic diseases.
- Develop a model community-based rheumatology clinic that provides quality health care services.
Increase awareness of and access to clinical investigations designed to understand, treat, and prevent complications and chronic disabilities associated with rheumatic diseases.
- Develop and disseminate public health education information on the process of clinical trials and their impact on medical advances.
- Develop and disseminate education material about current clinical investigations that are seeking participation by members of the community.
- Develop a model community-based rheumatology clinic to provide increased access to clinical investigations designed to understand, treat, and prevent complications and chronic disabilities associated with rheumatic diseases.
Increase the number of underrepresented minority investigators at the NIAMS and in the biomedical research fields related to rheumatic diseases.
- Develop and provide science education focused on the NIAMS disease areas to students and teachers at all grade levels.
- Provide research training and mentoring opportunities for students and teachers.
- Provide research employment opportunities to underrepresented minority investigators.
- Develop a model community-based rheumatology clinic to provide research and patient care training opportunities for underrepresented minority investigators.
The initial phase of the HPP focuses on African Americans and Hispanics/Latinos who reside in the metropolitan Washington, D.C., area. Each goal of the HPP refers to a specific group within the geographical region encompassed by the program.
- Public Health Education - The focus is on the general African American and Hispanic/Latino communities from childhood through adulthood.
- Patient Care - The primary focus is on African Americans and Hispanics/Latinos who suspect they have or who have been diagnosed with a rheumatic disease. The secondary focus includes family members, friends, and the general public.
- Access to Clinical Investigations - The primary focus is on African Americans and Hispanics/Latinos who have been diagnosed with a rheumatic disease. The secondary focus includes family members, friends, and the general public, as well as health care providers who can refer patients for treatment.
- Recruitment to Research Careers - The focus includes students and teachers, as well as investigators within the African American and Hispanic/Latino communities.
This document was developed through a continuous process of revision; it continues to be a work in progress as we respond to community needs and operationalize the NIAMS Community Health Center and other components of the program. Three key meetings brought together representatives from the African American and Hispanic/Latino communities on February 29 and November 9, 2000, and June 6, 2001. The following section summarizes the HPP community partners' recommendations and suggestions. In addition, it reflects ongoing feedback gathered from partners at individual meetings and community forums.
Throughout our conversations with community partners, participants have stated that it is important for organizations that wish to work with the community to understand and be involved with the community at the local level. Organizations should:
- Become familiar with where community members live and work, including the health care relationships between Maryland, Virginia, and the District of Columbia.
- Recognize that there are formal and informal leaders and identify who they are.
- Understand the culture and the diversity of the community (i.e., knowledge, attitudes, and beliefs).
- Identify what does and does not work in specific communities and why.
- Know the history of the community and its members.
It is also important to assess potential obstacles to the effectiveness of health education and promotion programs designed for specific communities. One obstacle in particular identified for both the African American and Hispanic/Latino communities is the limited availability of financial and human resources. The list below includes additional critical success factors for reaching the community.
- Trust. The people and organizations involved in the program should have established relationships with the community. The person delivering the health message should be familiar to and respected by the community.
- Ownership. Community members must be included in planning, implementing, and evaluating the program that is designed to address their needs.
- Culture. It is important to be aware of the knowledge, attitudes, beliefs, and values of the community.
- Message (language and comprehension). The health message must be appropriate for the community. Health messages should be culturally sensitive, and the community should be able to understand all terms used.
- Access. Services should be accessible by the community. They should be available on the days and during the times that are convenient for the community. If necessary, daycare and transportation should be provided.
- Resources. Ample staff, materials, and other resources should be provided to ensure continuous responsive service to and within the community.
Partners have stated the importance of obtaining input directly from members of the community on topics such as health education and promotion programs and medical research. Input from the community establishes ownership and ensures that the program is responsive to the community's needs. In addition, partners have recognized the importance of having gatekeepers like themselves come together for an initial assessment of the community, but strongly suggested working at the "grassroots" level to gauge the interest of the people who will be affected by the program.
Listed below are examples of methods for gathering input from the community.
- Conduct focus groups at the grassroots level to formulate questions pertaining to the program. Consider questions such as What public health and patient education services are needed? What is already available?
- Design and conduct a survey at the grassroots level using questions formulated from focus groups. The whole community (i.e., community leaders and patients and their friends and families) must provide input to the program.
- Contact the patients and their caregivers.
- Make sure community members feel a part of the program.
A number of services currently exist for public health and patient education, as well as patient care for people with rheumatic diseases in the metropolitan Washington, D.C., area. In addition, mechanisms to enhance recruitment to research careers are also in place. There remains, however, a need for additional resources to provide education and care, as well as research training, mentoring, and employment opportunities to the community. Because many resources (i.e., programs, materials, and services) are currently available, partners stated that it is important to know what resources are already in place in order to prevent duplication of efforts.
Following are examples of ways to facilitate collaborative efforts between the NIAMS and the African American and Hispanic/Latino communities in the metropolitan Washington, D.C., area.
- Expand current programs in health promotion by partnering with existing programs and clinics. Provide resources (human, financial, technical) to help expand these existing programs (don't replicate efforts).
- Conduct a needs assessment on the products and services available to the community.
- Train community partners to help deliver programs. A successful example is Senior Works by the D.C. Office on Aging.
- Hire and provide qualified health professionals who represent the community in their respective neighborhoods whenever possible (consider age, race, ethnicity, gender, etc.).
- Share existing information and resources that have been researched and published by NIH/NIAMS (e.g., research linking frequency and severity of lupus with African Americans and Hispanics/Latinos and genetic research linking lupus to West Africans).
- Highlight the accomplishments of minority institutions (e.g., Howard University's involvement with groundbreaking research on vitiligo and Howard's listing as one of the country's best schools in U.S. News and World Report).
Community-based organizations have direct access to community members and can provide links to the community for needs assessments, delivery of materials and services, and program evaluations. Community partners suggested that the HPP include partnerships with various types of organizations and businesses to deliver program resources. Underlying this recommendation is the recognition that there are particular organizations for different communities and that targeted efforts must occur for African Americans and Hispanics/Latinos. Examples of these include:
- Faith-based organizations (e.g., African Americans [Methodist, Baptist traditions] vs. Hispanics/Latinos [Spanish Catholic Centers and evangelical congregations in Maryland, Virginia, and the District of Columbia])
- Health care organizations (e.g., hospitals, doctor's offices, HMOs, medical clinics, Mary's Center, La Clinica del Pueblo)
- Social service and mental health agencies (including Alcoholics Anonymous and Narcotics Anonymous)
- Civic clubs.
- Fraternities and sororities (particularly important in the African American communities)
- Voluntary groups (including the Arthritis Foundation and Lupus Foundation of America)
- Chambers of Commerce (including the Hispanic Chamber of Commerce)
- Community centers (e.g., recreation centers, day care centers, senior centers, homeless shelters)
- Senior networks (e.g., Aging Network, Senior Resident Housing, Educational Organization for United Latin Americans (EOFULA), Maryland's Support Center)
- National Black Nurses Association and the National Hispanic Nurses Association
- National Medical Association and the National Hispanic Medical Association
- American Association for Retired Persons (AARP)
- Parent and Teacher Associations (PTA)
- Public and private primary and secondary schools
- Universities and academic centers (Hispanic-Serving Institutions, Historically Black Colleges and Universities, community colleges, medical schools)
- Local government organizations (District of Columbia's Office on Aging, Department of Health and Human Services, Office on Latino Affairs, Motor Vehicle Administration, Department of Public Works, and Department of Transportation [metro stations, bus stops, cabs]; Montgomery County's DHHS Latino Health Initiative; public libraries across Maryland, Virginia, and the District of Columbia)
- Private businesses (e.g., restaurants; health clubs; department stores; drug, grocery, and health supply stores; pharmacies; movie theaters; beauty and barber shops)
Partners have identified types of resources needed to provide public health education and patient care, and to enhance recruitment efforts to research careers. In general, they have suggested that the NIAMS hire and train people from the community to deliver resources. It is important that the community identify with the people who are delivering health care and health messages, so race, age, gender, language (English, Spanish, bilingual, Vietnamese, etc.) and communication skills must be considered. Additional examples are listed based on the four key areas of the HPP.
- Basic health education information for patients and caregivers. Arthritis and lupus are important topics to both the African American and Hispanic/Latino communities.
- Community health information sessions and seminars led by people who reflect the community and/or people affected by the disease (consider language, age, race, ethnicity, gender, etc.).
- Specific health materials that educate the community on "good science" versus myths. Health beliefs will differ between African Americans and Hispanics/Latinos, so messages must be specific and culturally appropriate. Of particular importance is the use of folk remedies and other forms of alternative and complementary medicine.
- Services with flexible, convenient hours and locations (e.g., hold programs in drug, grocery, shop'n go, and video stores; schools). Provide childcare and refreshments if necessary.
- Health information in easy-to-use formats such as brochures, refrigerator magnets, and checklists.
- Training for community members to teach in the community (e.g., Senior Works program by the D.C. Office on Aging).
- NIH staff to provide outreach.
- List of referrals and services.
- Training material for health care professionals.
- NIH staff to provide outreach.
- Clinical studies recruitment brochure with information on how participation in a study can benefit the patient. In the brochure, address questions such as How does this benefit me? How will I be taken care of? How will I be involved? Consider issues of primary language spoken at home, bilingual materials, and limited literacy.
- Media ads for radio and TV (English and Spanish language venues) on health information and clinical studies recruitment.
- Community-level staff hired by the NIAMS to promote studies. Grassroots efforts are labor intensive, so staff should be compensated.
- Collaborations with investigators at minority colleges and universities to increase minority participation in research.
- NIH staff to provide outreach.
K-12 School Levels
- Science education material (consider appropriate language, knowledge, and reading comprehension levels).
- Tutorials and field trips for science teachers and their students.
- Mentoring partnerships with professional NIAMS staff and educators/administrators.
- Educational development programs for new and young researchers.
- NIH staff to provide outreach.
College/University and Professional Level.
- Sessions at professional meetings that focus on the needs of African American and Hispanic/Latino clinical investigators and physicians.
- Internships and cooperative education opportunities in laboratory and science-related positions.
- Training for potential researchers at the NIH/NIAMS to enhance skills or facilitate a career change.
- Training for health professionals on mentoring and coaching.
- Mentoring partnerships with professional NIAMS staff and educators/administrators at the pre- and post-graduate levels.
- Educational programs to teach investigators and physicians about career development.
- Diversity and sensitivity workshops for physicians and health care providers.
- Continuing education credits (e.g., CEU, CME) provided by NIH/NIAMS to Historically Black Universities (Morgan State University, Howard Univrsity, Morehouse University, Meharry University, etc.) and Hispanic-Serving Institutions.
- Collaborations with organizations such as the National Medical Association, National Black Nurses Association, National Hispanic Nurses Association, and the National Hispanic Medical Association for professional training opportunities.
- Funding to Historically Black Colleges and Universities and Hispanic-Serving Institutions (including large research grants, as well as career development and training grants).
- Programs for people changing careers.
- NIH staff to provide outreach.
For the HPP to reach African American and Hispanic/Latino communities effectively, the resources developed must respond to the needs of the particular community and be distributed through specific channels familiar to the community. Partners have identified organizations and channels that should be used to provide resources to the community. Organizations include those listed in the Appendix. Below are examples of channels that have been suggested for distributing resources.
- Local media (African American and Hispanic/Latino newspapers, newsletters, bulletins, TV, radio)
- School year books (place ad for training opportunities [high school & college levels])
- Barber shops and beauty salons
- Health fairs
- Health forums
- Health seminars
- Web sites
- Sports events
- Movie theaters
- Metro and bus stations
Assessing the process, impact, and, when appropriate, the outcome is key to the success of any program. To accomplish this, we will need to develop strategies for evaluation and explore feedback mechanisms. Community partners stressed the importance of conducting focus groups at the grassroots level to assess the community's needs. We are requesting additional suggestions for evaluating the program from partners and other community representatives and members.
Health Partnership Program Partners
Arthritis Foundation, Metropolitan Washington Chapter
Barney Neighborhood House
City of Baltimore, Hispanic Community Liaison
Congress of National Black Churches, Inc.
Department of Health and Human Services, Office of Minority Health Resource Center
D.C. Baptist Convention
D.C. Department of Health
D.C. Family and Child Services
D.C. Office on Aging
Friendship House Association
Greater Washington Urban League
La Clinica del Pueblo
Latino/a Gay and Lesbian Organization
Life Skills Center Lupus Foundation of America
Lupus Foundation of Greater Washington
Marshal Heights Community Development Organization
Maryland Department of Health and Mental Hygiene
Michaux Senior Center
Montgomery County Department of Health and Human Services
Montgomery County Department of Health and Human Services, Latino Initiative
National Association of Hispanic Nurses
National Hispanic Council on Aging
NIH Hispanic Communications Initiative
NIH Office of Equal Opportunity
National Office of Concerned Black Men
Self Reliance Foundation
Tenants and Workers' Support Committee
United Planning Organization
Unity Health Care
University of the District of Columbia
Walter Reed Hospital