Health Disparities Strategic Plan: Fiscal Years 2009-2013

Integration of core areas of investment at the NIA occurs at many levels within the NIA. The Office of Planning Analysis and Evaluation (OPAE), Office of Special Populations (OSP) and the Office of Communications and Public Liaison (OCPL) work across divisions to assess current investments, future needs, scientific opportunity, and potential partnerships. Working across the intramural and extramural programs and research divisions, the offices work to accomplish integration, implementation, and evaluation activities. The activities may include inventory of current investments; analysis of current research portfolios to identify gaps, overlaps, and capabilities; identification of potential collaborations; and implementation of various evaluation projects.

4.1 Area of Emphasis: Contribute to a coordinated interdisciplinary approach to reduce and ultimately eliminate health disparities among older adults and contribute to a coordinated NIH strategic plan.

4.1.1 Objective One: Contribute to the NIH Health Disparities Strategic Plan

This document outlines the broad strategic directions of the NIA and provides a point of reference for setting priorities and a framework for systematically analyzing the Institute’s scientific portfolio relevant to minority and health disparities research.

4.1.1.1 Action Plan

The NIA, in compliance with Public Law 106-525 and as requested by the Director of NIH, and the Director of the National Center on Minority Health and Health Disparities, is providing its 2009-2013 Strategic Plan. The plan has been reviewed by internal and external stakeholders and members of the National Advisory Council on Aging.

4.1.1.2 Performance Measures

• As directed, goals, objectives, action plans, performance measures, outcome measures and budget are specified in four major areas of emphasis.

4.1.1.3 Outcome Measures

• 2009-2013 Strategic Plan in compliance with Public Law 106-525

4.1.1.4 Projected Budget

Part of RMS Budget.

4.1.2 Objective Two: Advance our understanding of the multifactorial causes of AD and related dementia health disparities through the Alzheimer’s Disease Research Center Satellite Diagnostic and Treatment Clinics.

The Alzheimer’s Disease Centers (ADCs) and collaborating partners have transformed the neuroscience enterprise and what we know about Alzheimer’s disease and related dementias. A critical function of the Centers is on efforts to increase the diversity of the research patient pool and enhance the research capabilities of the ADCs by integration of research, capacity building, and outreach.

The Alzheimer’s Disease (AD) Centers program conducts a wide array of activities focused on outreach, education and recruitment of diverse populations to research partnerships in local communities across the country. Primary among these efforts is the Satellite Diagnostic and Treatment Clinic program, initiated in 1990, linking satellite clinics within local communities to existing AD centers. The goal of this initiative is to use the satellite clinics to target minority, rural or other underserved populations in order to increase the heterogeneity of the research patient pool. It also permits special population groups to participate in research protocols and clinical drug trials associated with the parent Center. The inclusion of patients from a variety of populations allows investigators to answer questions related to clinical problems in Alzheimer's disease that will be applicable to a diverse general population. Recent years have seen some strong successes among the satellite programs. Highlights of this program include: a satellite clinic within the American Indian Choctaw nation reservation that utilizes telemedicine as well as a traveling nurse to maintain links with the University of Texas Southwestern Alzheimer’s center, a satellite in Harlem linked with the Columbia University Alzheimer’s center in New York, a clinic at Grady Hospital which is affiliated with both the historically black Morehouse School of Medicine and the Alzheimer’s center at Emory in Atlanta, and a clinic focused on rural populations associated with the AD center at Washington University in St. Louis.

4.1.2.1 Action Plan

NIA will continue to support thirty ADCs. Since initial funding of the satellites, minority recruitment into the ADC Clinical Cores has increased from 4 percent to 20 percent. The satellite clinics extend the diagnostic and management services as well as educational activities offered by the ADCs to under-served areas. The satellite clinics also enhance the clinical research capabilities of the Centers through the diversification of the research patient pool by offering the opportunity to special population groups to enter clinical drug trials and to participate in other clinical research efforts. Many SDTCs have hired minority staff to be the liaison with the communities. Most of the satellite clinics focus on outreach, recruitment, and retention of specific minority populations, often working closely with local and state agencies, health care organizations, churches, community clinics, and housing projects. Several are developing culturally and language sensitive cognitive and dementia screening instruments, as well as neuropsychological and neurological examinations. Along with the parent ADCs, several are conducting studies on the onset and course of AD in specific minority populations.

The Education Cores of the ADCs are responsible for:

• Demonstrating appreciation for participants by recognition ceremonies, luncheons and other events on their behalf.
• Instructing community members to carry out simple memory screenings or other clinical test on neighbors and congregants.
• Recruiting minority employees of an institution to outreach on behalf of the center and its related research.
• Networking with health care professionals (like public health nurses, physicians, pharmacists, social workers) as well as with other community leaders (such as clergy) outside of the center can support the entry into an outlying neighborhood with target populations for study.
• Partnering with ongoing longitudinal community based studies such as the Sacramento Area Latino Study on Aging at the UC Davis AD center or the Los Angeles Latino Eye Study at the University of Southern California AD center.

The Centers actively formulate strategies and plans to recruit diverse populations including defining and addressing barriers. Some strategies that have met success are: improved patient coordination (for example, reorganizing physical locations of appointments), increasing the personal attention patients receive, home visits, and support groups. The collaboration of multiple ADCs, or collaboration with other entities (other types of centers, or other departments, such as marketing) within an institution helps to address the lack of resources for recruitment. Also, it has been noted that presenting a topic to the community that is broader than AD can attract larger audiences. Barriers to success include cultural and personal beliefs regarding participation in medical research including clinical trials, lack of knowledge within the medical establishment about how to interact with minority populations, personal behavior of the medical staff toward minority populations, and historically poor interactions with individual medical institutions and some minority communities. In addition, many physicians are reluctant to diagnose Alzheimer’s disease for multifaceted reasons including lack of reimbursement for relevant procedures, lack of time to provide appropriate follow up care, lack of knowledge of when and to whom to refer, lack of information about diagnostic criteria and belief that there is no treatment. This reluctance is anecdotally more pronounced in minority communities, although there are no reports of this discrepancy in the literature. Additionally, there are other characteristics in the targeted population that increase the complexity of minority recruitment, for example, linguistic ability in the language in which they are assessed, bilingualism, transportation issues, education levels, health literacy and interest in personal health care. In Hispanic populations, some institutions report relocation of those who are chronically ill to their country of origin, which makes those individuals inaccessible for follow up and autopsy. Characteristics of the institution can also limit the effectiveness of patient recruitment such as a lack of leadership or loss of experienced staff members. The realities of limits in time and resources can begin to be mitigated by reviewing internal business process methods to recruitment/retention activities. For example, one center altered the focus from individuals to larger groups, such as continuum of care facilities. Also, there is a developing focus on the importance of actively training and hiring minority staff members that interact with the target populations. Finally, strategies for brain donation consents may require novel strategies since actual autopsy rates remain low in minority populations across centers.

Some important examples of ADC recruitment efforts are highlighted below:

• University of Texas SW Medical Center is heading Project ALERT (Alzheimer’s Links to Education, Research & Treatment) in conjunction with the LINKS, Inc., a national African American women’s civic organization with 12,000 members. This ongoing collaboration has involved a multicenter, satellite linked “train the trainer” session that was described in an article featured in NIA’s Minority Research and Training Newsletter.
• The University of Pennsylvania has produced a personalized keepsake booklet as a gift to donors to help address low autopsy rate in targeted populations. There is discussion with the Hispanic population addressing many of the cultural and religious concerns brought up by autopsy and brain donation. It is hoped that by developing the personal relationship with the family and taking part in creating a tangible memory product which expresses remembrance, commitment, future generations and pride for the family that the follow through for autopsy will increase.
• Boston University began a Refer a Friend campaign to increase referral rates.
• The Harper Fellows Project was established by the University of Alabama at Birmingham's Department of Neurology and the ADRC in 2007 to provide a unique educational opportunity to minority college students enrolled in Historically Black Colleges (HBCs) in Alabama. The program, initiated by Dr. Richard Powers, was named for Dr. Mary Starke Harper, a native Alabamian who achieved international recognition in care for older persons. Dr. Harper was the first African American home health nurse in Alabama and she has an endowed chair in Nursing Sciences named for her at Tuskegee University.
• Washington University is disseminating research information to the community that is specific to the target population. This demonstrates to the population that biomedical research is being conducted on their behalf and reinforces that their participation is important.
• Arizona and Mayo have developed DVDs targeted to Native Americans and African Americans, respectively.

The ADRC SDTC program, in partnership with the NIA OCPL will continue to develop materials and strategies to enhance recruitment and outreach to racial/ethnic and other health disparity populations. Some examples of materials that will continuously be disseminated by the OCPL and ADEAR Center are annual Progress Report on Alzheimer’s Disease and successful integration projects like the HBO Alzheimer’s Project.

4.1.2.2 Performance Measures

• Development and expansion of culturally and linguistically sensitive and appropriate assessment instruments, number, and type of outreach programs.
• Identification of opportunities for transformative initiatives similar to the HBO Alzheimer’s Project.

4.1.1.3 Outcome Measures

• Demonstrated outreach to minorities with cognitive problems and AD, including their recruitment into clinical studies and trials.
• Number of minority/health disparities related research grants affiliated with the center, number of staff from underrepresented groups, number of diversity supplements, number of underrepresented groups contacted, minority related academic publications and number of minority targeted materials, such as brochures and DVDs.
• Number of underrepresented participants in various types of research studies.
• Extent to which integration activities raise standards and lead the field in advancing knowledge in an identified area.

4.1.1.4 Projected Budget*

*No inflationary increases are provided for 2010 and 2011. The sum of all projected budgets will exceed the total sum expended on minority health and health disparities research and activities due to overlap among objectives.

4.2 Area of Emphasis Two: Resource Centers for Minority Aging Research (RCMARS)

The Resource Centers for Minority Aging Research continue to be a highly successful key part of the integrative infrastructure supporting NIA research, training and outreach on minority health and health disparities. The program was established in 1997 with several goals:

• Increase the number of researchers working on the health of minority elders.
• Increase the diversity of the research workforce by mentoring minority scholars.
• Conduct research to improve recruitment and retention of minority elders in clinical trials and interventions.
• Create culturally sensitive measures of health.
• Increase the effectiveness of interventions designed to improve health and well-being of diversity populations.

The RCMAR program finished its twelfth year of funding in 2009. There are currently six RCMAR sites located at the University of Alabama-Birmingham, the University of Pennsylvania, the University of Michigan/Wayne State University, the University of Colorado, the University of California-San Francisco, and the University of California-Los Angeles. The National Coordinating Center is at UCLA.

4.2.1 Objective One: Support Resource Centers for Minority Aging Research

NIA will continue and build upon the successes of the existing RCMARs to create scientific infrastructure for conducting research on health disparities between and within various racial and ethnic groups of minority and non-minority elders. Because of the breath of this initiative, RCMAR goals crosscut several of the Strategic Plan’s sub-goals and are placed in this section on integration. The six RCMAR sites are intended to, in part, address this leading Area of Emphasis.

4.2.1.1 Action Plan

The RCMARs have been in existence with past co-funding from the National Center for Minority Health and Health Disparities and the National Institute for Nursing Research since 1997. The RCMARs will continue to include: (1) focused research on recruiting and retaining minority group members in research; (2) connections among ongoing research for the purpose of recruiting and retaining minority members; (3) research links between other appropriate NIA-supported Centers (e.g., AD Centers) and other funded initiatives; (4) development of race/ethnic sensitive, yet comparable measurement; (5) expanded opportunities of mentoring minority and non-minority investigators for research and sustained careers in the health of older minority populations; (6) opportunities to develop research and mentoring links between research institutions and Traditionally Minority Based Institutions; and (7) improve communication between researchers and minority - end result research users.

4.2.1.2 Performance Measures

• Continued use by the RCMARs of their Emphasis and Outcomes evaluation scheme to assure continued excellence.
• Continued mentoring of minority investigators and non-minority investigators in the conduct of research on the health of older diverse populations.
• Continued solicitation of spin-off grant applications based on RCMAR pilot investigator and senior investigators’ research.
• Workshops supported by NIA funds and organized by the RCMARs continued as a feature of the Gerontological Society of America pre-conference meeting.
• Workshops and RCMAR general publications on topics such as measurement in diverse populations and recruitment and retention of minority subjects in sociobehavioral and clinical research.

4.2.1.3 Outcome Measures

• Based upon the RCMAR Emphasis and Outcomes process, grants secondary to the RCMARs submitted and awarded.
• Number of participants in the RCMAR Scholars program for mentoring diverse, generally young, investigators for careers in research on eliminating health disparities.
• Increase in the number of publications and grant applications on topics related to the RCMAR Scholars’ areas of interest.
• Increased visibility of the RCMAR research through public communication and presentations.
• Distribution to the research community of RCMAR-developed measurement tools and instruments that are less biased, racially and ethnically.

4.2.1.4 Projected Budget*

*No inflationary increases are provided for 2010 and 2011. The sum of all projected budgets will exceed the total sum expended on minority health and health disparities research and activities due to overlap among objectives.

4.3 Area of Emphasis Three: Health Disparities Resource Persons Network and the Health Disparities Toolbox

The Health Disparities Resource Persons Network (HDRPN) is an NIA Web-based resource consisting of research professionals in aging, geriatrics, and gerontology who volunteer their services in support of research and NIA's goals to redress health disparities and to improve the health status of racial, ethnic, disadvantaged, and other health disparity population older adults. This initiative positions us to assess current investments, future needs, scientific opportunity, and potential partnerships. Working across intramural and extramural programs and research divisions, we will participate to accomplish integration, implementation and evaluation activities that may include an inventory of current investments; analysis of current research portfolio to identify gaps, overlaps, and capabilities; identification of potential collaborations that do not currently exist; and implementation of various evaluation projects. This integrative initiative will facilitate involvement across intramural and extramural programs and divisions of the NIA and within the scientific community.

4.3.1 Objective One: Transform the interactive mode of communication among managers, staff, and consumers by providing electronic access (social network) to grant technical and capacity-building assistance supporting efforts to improve minority health and reduce or eliminate health disparities and health inequities.

4.3.1.1 Action Plan

The Office of Special Populations in partnership with the divisions will continue to support membership in the network and link investigators to NIA resources that may help to facilitate their work with minority and other health disparity populations.

4.3.1.2 Performance Measures

• Number of participants in the HDRPN
• Relevance of consultation provided as determined by end users.

4.3.1.3 Outcome Measures

• Indicators of information use as determined through user surveys, focus groups, and other tracking and monitoring.

4.3.1.4 Projected Budget

RMS Budget funding.