Volume One — Executive Summary
The Minority Aging Review Committee, in partnership with the National Advisory Council on Aging, engaged in a year-long process that included meetings, conference calls, and electronic communication. This Executive Summary presents in a concise form the basic findings of the 1999 National Institute on Aging (NIA) review of minority aging research and training and outreach activities. In addition, we list the recommendations and supporting rationale of the National Advisory Council on Aging Minority Aging Research Review Committee. We believe that these recommendations have the potential to significantly influence NIA program priorities, the NIA strategic plan, and ultimately the health of America’s rapidly growing minority aging populations. The report consists of three volumes including this executive summary presenting the Committee’s major findings and recommendations based upon a review of minority-related research and training activities from 1993 to 1998. Volume Two of the report (Sections I – IV) provides a context for many of the initiatives designed to enhance minority aging health, and the representation of minorities in aging research and training. The background sections of Volume Two (Sections V-VII) are the result of thoughtful analyses by NIA staff summarizing programmatic activities, data, and initiatives in research relevant to minority aging health and in training of minority researchers. The programmatic reports (Section VI) consider training of minority scientists as well as relevant research of non-minority scientists investigating minority health questions. Volume Three consists of a set of appendices that includes reference reports, lists of grants coded as minority-related research, lists of Program Announcements and Requests for Applications, and other printed materials relevant to this project.
Minority-related aging research is defined as research to improve the health status and understanding of health and aging of minority identified Americans across the life span. This broad review of NIA minority aging research, training and outreach activities is a landmark effort and represents the first time that the NIA has consolidated a review of minority aging health issues in one report. This report will serve as a standard resource for Institute staff and as a catalyst for NIA action at the beginning of the 21st century. The review process is one step in a planned effort to systematically consider and evaluate progress in minority aging research across the NIA. It is not presumed to be an exhaustive or complete review of the Institute’s history, but rather the current basis from which future research and training activities can evolve. This is a first step in a strategic process to assess and evaluate progress to date. Limitations of available data from NIA and the National Institutes of Health identified during the review process are noted throughout the body of the full report.
The health status of all U.S. racial and ethnic groups has improved steadily over the last century. Disparities in major health indicators between white and non-white groups, however, are growing. In general, African American, American Indian, and Hispanic ethnic and racial groups are disadvantaged relative to whites on most health indices, whereas Asian Americans appear to be as healthy, if not healthier, than whites on most indicators. These overall group comparisons, however, mask important differences in the health status of ethnic subgroups. Americans of Southeast Asian descent, for example, suffer from higher rates of cervical and stomach cancers than all U.S. population groups and experience poorer health overall than U.S. whites (Miller et al., 1996). Similarly, both Mexican Americans and Puerto Ricans suffer from high rates of diabetes. However, various research projects have shown that the prevalence rate of non-insulin dependent diabetes mellitus is two to five times greater among Mexican Americans than among the general population. Older Mexican American women have the highest risk (Stern and Haffner, 1990).
Further, socioeconomic status appears to operate in complex ways with race and ethnicity to contribute to the observed differences in health status. In general, white Americans (of all ethnic categories) enjoy higher incomes and education attainment levels than other U.S. racial and ethnic groups. Further, white Americans are more likely to have health insurance and to be better educated about healthy behaviors, practices, and diets, seek routine medical care, and to have better access to preventive medical services. Socioeconomic factors, however, do not completely account for observed racial and ethnic differences in health status (Williams et al., 1994). In fact, the findings of several studies reveal that racial disparities in health status persist even when controlling for socioeconomic status (e.g., Advisory Board to the President's Initiative on Race, 1998).
The committee raised concerns about conventional definitions and classifications of race. The categorization of individuals simply by race ignores other important research variables that can lead to valuable insights into predictors of risk. Many groups, including the American Anthropological Association and the Institute of Medicine (IOM) Committee on Cancer Research Among Minorities and the Medically Underserved, have been critical of the use of the term “race” in health research, primarily because it implies the existence of distinct human subgroups that differ fundamentally in biological makeup and origin and ignores the tremendous heterogeneity within groups. Genetic evidence indicates that most physical variation, about 94%, lies within racial groups (American Anthropological Association, 1996; American Association of Physical Anthropologists, 1996; Institute of Medicine, 1999). The U.S. Office of Management and Budget notes that racial and ethnic classifications do not carry scientific or anthropological validity; rather, the classifications are based on U.S. social and historical considerations.
Since its inception in 1974, the National Institute on Aging (NIA) has “pushed the envelope” and supported outstanding research to address the special problems and needs of older Americans and to improve scientific understanding of the aging process. In 1999, the NIA began a year-long celebration of its 25th anniversary, providing an appropriate time for reflection on past achievements and future opportunities in the field of aging research. At the same time, the NIA Director, in concert with the National Advisory Council on Aging (NACA), sought to specifically reflect on past achievements and future opportunities in aging research on ethnic and minority populations. To fulfill this mandate, the NIA invited Council members, extramural scientists and senior NIH officials to assess the progress of minority aging research at the NIA. The year-long review focused on the overall NIA mission, intramural and extramural program activities, as well as training initiatives. Experts who are leaders in minority relevant research and training examined a broad range of topics including demographic, biological, medical, and social aspects of minority aging. The NIA charged the Minority Aging Review Committee with three broad questions to help guide the review.
Charge to the Reviewers
The charge to the reviewers was to assess the status and progress of minority aging research at the NIA by: (a) reviewing research and training initiatives and activities from 1993-1998, (b) evaluating the effectiveness of NIA in enhancing the competitiveness of minority research applicants and, (c) reviewing NIA’s initiatives and activities that address major health problems from which older minority people suffer disproportionately. A significant component of each phase of the review was an emphasis on objective outcome data that could be used as indicators of productivity and success in minority aging research.
Specific questions to be addressed were related to Research, and Training and Outreach activities. The Research questions included:
- What are important aging research questions in minority populations and is NIA addressing these questions?
- Is the topical balance of minority aging research within each program appropriate to the program's mission?
- What are areas of science relevant to minority aging that NIA needs to address more rigorously?
- Is the scientific planning process appropriate for developing programmatic activities relevant to minority-aging research?
The Training and Outreach Activities questions included:
- What training mechanisms are most effective in developing minority investigators?
- How do we better encourage minorities to use existing mechanisms?
Despite NIA’s extensive efforts to gather and analyze data, indices of productivity and success are imperfect. There are few common, and or accepted, measures of success for Special Populations Initiatives across the NIH. Further, there are no requirements by law for reporting these outcomes by race and ethnicity. Fundable priority scores, number of publications, number of grants funded, total research dollars, honors, awards, faculty promotion and tenure, publications in top tier journals, continuous NIH funding for more than 10 years, international reputation, and service on NIH Advisory Committees have all been considered or suggested as useful metrics for success in science. But each of these is incomplete. The nature of success varies from one circumstance to another. Consequently, all such measures in the report should be treated with care and judgment.
Ethnic and Racial Categories and Definitions
The categories listed below are used to report and present data on race and ethnicity. These categories were formulated by the Federal Government for purposes of social and political programming. The “Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity” were developed by a Federal interagency committee to provide a common language for uniformity and comparability in the collection and use of data on race and ethnicity by Federal agencies.
The current categories for data on race and ethnicity are American Indian or Alaska Native, Asian, Native Hawaiian or Pacific Islander, Black or African American, Hispanic or Latino, and White or Caucasian. The minimum categories for data on race and ethnicity for Federal statistics, program administrative reporting, and civil rights compliance reporting are defined as follows:
American Indian or Alaska Native. A person having origins in any of the original peoples of North and South America (including Central America), and who maintains tribal affiliation or community attachment.
Asian. A person having origins in any of the original peoples of the Far East, Southeast Asia, or the Indian subcontinent including, for example, Cambodia, China, India, Japan, Korea, Malaysia, Pakistan, the Philippine Islands, Thailand, and Vietnam.
Black or African American. A person having origins in any of the black racial groups of Africa. Terms such as "Haitian" or "Negro" can be used in addition to "Black or African American."
Hispanic or Latino. A person of Cuban, Mexican, Puerto Rican, South or Central American, or other Spanish culture or origin, regardless of race. The term, "Spanish origin," can be used in addition to "Hispanic or Latino."
Native Hawaiian or Other Pacific Islander. A person having origins in any of the original peoples of Hawaii, Guam, Samoa, or other Pacific Islands.
White. A person having origins in any of the original peoples of Europe, the Middle East, or North Africa. (Excerpt from the Federal Register, October 30, 1997).
To the extent possible and where individuals have voluntarily identified race or ethnicity, the NIA has used the information to monitor compliance with federal standards and progress toward diversity in research, training, and improvement of health of older minority persons and populations.
Report Assumptions and Observations
The Minority Aging Review Committee made certain assumptions that informed and directed our collective thinking and behavior. These assumptions have guided the logic of this report, and are reflected in the recommendations. The main assumptions are listed below:
- The Reviewers concur with the American Association of Physical Anthropologists (1996) that “races, in the sense of genetically homogenous populations, do not exist in the human species today.” This statement should not be interpreted to mean that all humans are the same, but that biologically-defined racial groupings do not necessarily help to understand how individuals are different (Freeman, 1998).
- For purposes of this report, race and ethnicity are defined as social, cultural, political and legal constructions denoting relationships among groups that reflect a cultural framework of societal, institutional, and political values (Harding, 1998, Manson 2000).
- There exist important and substantive science questions on race and ethnicity – in fact, aging research on minority populations is a new frontier in aging .
- The need exists to denote racial differences in explicit or operationally definable terms that are more descriptive and representative. Investigators will be challenged to state, apriori, what is meant, socially, politically, and culturally, when using the terms Caucasian, African American, Asian, Pacific Islander or American Indian.
- Particular care must be taken in the design and conduct of research involving minority groups to minimize misinterpretations or the potential inappropriate application of results.
- The need for greater efforts in recruiting and retaining minority participants in research studies is especially important.
- The NIA strategic plan and the recommendations of the Committee for Review of Minority Aging Research, though developed separately, are usefully interrelated.
- Programs of the NIA collaborate on projects and initiatives that address questions and issues of mutual interests.
- The NIA has been and continues to be committed to continuing outreach, training and capacity-building programs for individuals from population groups under-represented among scientists in aging related research.
Relationship of the Minority Review to the NIA Strategic Plan and Scientific Planning Process
The NIA review of minority aging research and the development of the NIA strategic plan are allied activities that present a road map for the future. The two activities traversed similar issues and concerns related to minority health and health disparities. The two activities were completed over a comparable time frame and the early deliberations of the Minority Aging Research Review Committee helped to amplify content for inclusion in the Strategic Plan under Goal C, “Reduce Health Disparities Among Older Persons and Populations.” These companion activities address critical issues of improving the health of minority population groups, recruitment and retention of minorities in clinical studies, including an elaborated life-course perspective, clear definition of the terms culture, race and ethnicity, and the need for enhanced information dissemination to minority population groups.
Because the reviewers intended their recommendations to be closely related to the 1999 NIA Strategic Plan, the relevant section entitled, “Reduce Health Disparities Among Older Persons and Populations” is presented as part of this Executive Summary. The content of the Strategic Plan plus the Committee’s recommendations provide a comprehensive view of how the NIA might act to improve the health of older minority persons and population groups. The eight general recommendations of the NACA Minority Aging Review Committee are intended to supplement and clarify goals and objectives of the Strategic Plan and to indicate the need for directed actions that may substantively affect the life quality of minority elders.
The NIA maintains a year-round scientific planning process that draws upon interactions with scientists throughout the world, members of Congress, the Institute’s National Advisory Council on Aging and other advisory committees, constituency groups, and the public. These interactions stimulate internal consideration of potential new research strategies and provide a broad perspective for developing and refining plans. Emphasis is given to novel proposals and collaborative projects that promise to stimulate activities with other research organizations.
The NIA’s strategic planning process focuses on a 5-year planning horizon. The most recent strategic plan, developed by the Task Force on Aging Research in 1995, produced a comprehensive research agenda through fiscal year 2000. The NIA’s current strategic planning effort covers a 5-year time frame from fiscal years 2001 to 2005 and addresses goals for research, research training, research resources, and dissemination of health information. Members of the scientific community and the general public have been active in the plan’s development.
The plan addresses four major goals:
- Goal A Improve Health and Quality of Life of Older People
- Goal B Understand the Principles of Healthy Aging Processes
- Goal C Reduce Health Disparities among Older Persons and Populations
- Goal D Enhance Resources to Support High Quality Research
Research goals A, B, and C represent broad areas of investigation that NIA will pursue in the years to come. They are not mutually exclusive: there are many areas of overlap and interdependence. Advances in one area of science can provide clues and new directions for other areas of investigation.
The entire NIA Strategic Plan is available on the WWW homepage of NIA at www.nih.gov/nia/ For purposes of this report, content from the plan relevant to Goal C, “Reduce Health Disparities Among Older Persons and Populations,” is presented at the end of this Executive Summary. It should be noted that most of the content in Goals A, B and D of the Strategic Plan also have relevance to minority health issues but Goal C focuses directly on minority aging research concerns. To complement these three goals, Goal D will help ensure that aging research benefits from a strong infrastructure to support future research, program management, and information dissemination.
Response to Questions Guiding the Review
In this section:
In accordance with its charge, the Minority Aging Review Committee has assessed the status and progress of minority aging research at the NIA and addressed three overarching questions: What are the important aging research questions in minority populations? What training mechanisms are effective in engaging minority investigators? What strategies better encourage minorities to effectively utilize existing funding and training mechanisms?
The remarkable growth of older minority population groups world-wide poses both opportunities and challenges. Notable progress in a number of areas of research - biomedical, social, and behavioral - have improved health and function, and contributed to reduced rates of disability, for some older people but not all. The need to understand the factors that promote health and independence and those that lead to disparate rates of disease and disability has never been more urgent.
The issues identified during our deliberations and presented in this Executive Summary are of major importance, but must not be regarded as the final word on the subject. The Minority Aging Review Committee strongly believes that this type of review must be updated and revised as new data and information become available and new initiatives are implemented. Thus, in the spirit of government performance review, this report serves as a report card.
The National Institute on Aging has accepted the challenge of self-assessment. The NIA is addressing important research questions in minority populations across all programs and has identified relevant research questions that address each racial group, each of the leading disease causes of health disparity, and important relations among biological, behavioral, and social factors that affect health and wellness of minority elders.
The NIA has as its mission the improvement of health of older Americans through biomedical research and research training. To ensure equal participation in this process by all ethnic groups, the NIH and NIA have, since the early 1970s, supported programs focused on increasing the number of scientists who are members of minority groups under-represented in biomedical research. The NIA sponsors special minority research and research training programs and participates in NIH efforts to promote the involvement of minority scientists in ongoing research.
Monitoring Minority Aging Relevant Research
In an effort to consistently monitor research with relevance to minority populations, criteria for coding minority-related research were developed in FY 1997 under the auspices of the NIA Minority Working Group that has representation from all NIA program components. Prior to FY 1997, the NIA Office of Planning, Analysis and Evaluation using criteria different from those implemented in FY 1997 did coding of research projects centrally. The rigorous new criteria are intended to provide reliable and accurate reports of research that directly addresses research questions of relevance to the health and well being of minority elders, and that has the statistical power to address such questions. The resulting coding is used for estimating NIA-support for minority related research. Guidance for coding (see the full report, Section VII, page 19, “NIA Criteria for Coding of Minority-Related Research Projects”) research projects includes a set of criteria to be used for coding pending and obligated awards as minority-related and some examples for assistance in determining the degree to which a grant is focusing on minority research.
While progress has been made in improving monitoring of research spending, NIA is less able to monitor the minority status of researchers. Investigators are not required to report racial or ethnic identity. Given the limitations of data and the inability to track, with confidence, the numbers of minority investigators engaged in aging research across all programmatic activities, the review of minority aging research, 1993-1998, focused on coded minority-related research, and on initiatives specifically designed to attract minority investigators to aging research.
In the Biology of Aging Program (BAP), the reviewers noted little prior research in race and ethnic differences in biological aspects of aging. But several new initiatives in the identification of cellular and molecular mechanisms that might be linked to race and ethnic differences in cognition and disease states were described. The BAP demonstrated a long-standing commitment to active and effective training and educational outreach programs over the last five year period for racial and ethnic minority group students and professionals.
A relatively large part of the minority aging research programming has been, and is, located in the Behavioral and Social Science Program (BSR). In BSR several scientific opportunities have been identified. These include, identifying race and ethnic differences in health, identifying race and ethnic differences in cognitive development, identifying factors that covary with both race or ethnicity and health, health behaviors as possible determinants of health over the life-course, intervention research, e.g. REACH and ACTIVE, measurement and design opportunities, immigration and international mobility, and genetic influences on health among race and ethnic groups. In the area of cognitive functioning, Park, for example, has demonstrated that simple cognitive interventions can increase medication adherence in low SES African American elders. Similar work is ongoing in several other labs. ACTIVE, a multi-site trial, is studying the efficacy of cognitive interventions in white and black samples.
In demography and population epidemiology work by Manton, Preston, Vaupel, de Leon and others on racial differences in mortality, risk and disability have shown race and ethnic differences in life expectancy and years lived with chronic health problems and disability (Hayward, Haan and others). Farraro’s work has found race and ethnic differences in the operation of self-reported health and health problems. LaVeist found that self-rated health may be an independent predictor of mortality among African Americans. Smith, Kington, Burkhauser and others have found complex relationships of SES and wealth status on health, chronic conditions and disability. Satariano found race differences in post-treatment for cancer that seemed independent of any known explanatory factors .
The Geriatrics Aging Program identified a few, but significant, areas of ongoing research on race and ethnic differences. In endocrinology work is underway on ethnic differences in menopause symptoms and treatment (e.g. Freeman). In osteoporosis there are several studies on racial differences in hormonal status, bone mass, fracture susceptibility, hip structure and architecture and vitamin D insufficiency. In sarcopenia and physical frailty several large scale studies are underway on African American and Hispanic elderly (e.g. Gallagher, Baumgartner and others). Several studies on diabetes risk factor (e.g. Goldberg, Tinetti and others) and prevention studies on Type 2 diabetes (e.g. Clark). In cardiovascular disease a recent Program Announcement for continuing studies on the role of age-related blood vessel stiffening (Tyrrel and others), diet (Dengel), and blood clot-dissolving factors in AA elders (Booyse). In cancer some of the most active work is in prostate cancer diagnosis and treatment (Gotay) and genetic factors (Lang). In the area of functional assessment and disability studies are currently underway on older African Americans, Hispanics and other minorities (Hazuda, Miller and others) as well as in several Older Americans Independence Centers (Wei, Applegate and others) on genetic and hormonal factors (Fisher).
In the Neuroscience and Neuropsychology of Aging Program there is ongoing work on body composition, chemosensory perception and nutritional status in African Americans (Smith) and visual functioning and race (West), as well as sleep related studies on insomnia (Blazer, Foley and others). In the epidemiology of dementia there have been approximately 15 awards since 1993 on race and ethnic differences (Evans, Hendrie, Heyman, Haan, Larson, Farrer, Mayeux, and others). In neuropsychological test development work is being conducted on an age and education corrected version of the MMSE (Mungas, Marshall) and other assessment tools for understanding race and ethnic differences in cognitive functioning (Welsh, Teng, Lowenstein, Sano, Ripich, etc.). Finally, some research is focusing on methods for the recruitment of ethnic and race groups in Alzheimer’s disease clinical trials (Ballard, Welsh, Hart, and others).
In the Intramural Aging Program there is an emphasis on the recruitment of minority samples (Whitfield) in labs and in the BLSA to study race and ethnic influences on normal aging, differences in heart period variability, blood pressure variability and attentional regulation (Thayer) and prostate cancer and PSA vascular stiffness (Lakatta and Fleg). In addition recent work has focused on intracerebral and carotid artery velocity (Metter) and respiratory factors in blood pressure regulation (Anderson). Several major research initiatives, with a special focus on race and ethnic differences, are underway in the Epidemiology, Demography and Biometry Program, including the Piedmont Health Survey (Blazer & Campbell), the Honolulu-Asia Aging Study (Curb & Foley), the Women’s Health and Aging Study (Fried & Guralnik), and the Health and Body Changes Study (Newman, Kritchevsky, Cummings & Harris).
In general, the reviewers noted with enthusiasm the efforts and progress made by NIA’s extramural and intramural research programs. The success of the Research Supplements for Under-represented Minorities program, Intramural Research Training Awards, the annual Technical Assistance Workshop, and the Summer Institute on Aging Research are impressive in engaging new and minority scientists in aging research. Each of these initiatives is associated with significant and diverse productivity (program descriptions and illustrative outcome data are presented in sections VII and VIII of the report). The progress of the Resource Centers for Minority Aging Research (RCMARS), Alzheimer’s Disease Centers (ADC) Satellite and Diagnostic Treatment Clinics, Claude D. Pepper Older Americans Independence Centers (OAIC), Study of Women’s Health Across the Nation (SWAN), and individual research projects in addressing important research questions in minority populations, including issues of recruitment and retention, is commendable (see sections V and VI of Volume II).
Resource Centers for Minority Aging Research (RCMARs)
The long-range goal for the RCMARs is to decrease the minority/non-minority differential in health and its social sequelae for older people by focusing research upon health promotion, disease prevention, and disability prevention. To meet the long-range goal, RCMARs were required to create a research infrastructure around three objectives: (1) to establish a mechanism for mentoring researchers for careers in research on the health of minority elders; (2) to enhance diversity in the professional workforce conducting research on the health of minority elders; and (3) to develop and deploy strategies for recruiting and retaining minority group members in epidemiological, psychosocial, and/or biomedical research dealing with the health of the elderly. RCMARs are intended to be broadly multi-disciplinary with interaction among social, behavioral, and clinical sciences in order to meet Center objectives.
The evidence of productivity by RCMAR investigators is excellent. An evaluation strategy for RCMAR accomplishments, which can serve as a model for all similar research and training programs, is currently under the cooperative evaluation core. The following summary presents a few of the RCMARs’ accomplishments to date.
RCMAR Accomplishments to Date
Numbers of minority investigators receiving pilot funding
Numbers of minority supplements awarded
Attended NIA Summer Institute
New research projects funded by associated family
Publications (and in press) by faculty and students
Additional details of this program are provided in the Behavioral and Social Research Program report and associated appendices.
Study of Women's Health Across the Nation (SWAN)
Because the menopausal experience in minority women has been particularly neglected, special emphasis in minority populations on the unique biological and socio-cultural factors that may differentially influence the menopausal transition and its consequences is an integral part of SWAN. The primary objective of SWAN is to characterize the chronology of the biological and psychosocial antecedents and sequellae of the menopausal transition and the effect of this transition on subsequent health and risk factors for age-related disease in five representative community samples of African American, Puerto Rican, Japanese, Chinese and Caucasian women. This study was first funded in 1994 and successfully competed for continued five years of support from 1999 - 2004. SWAN is comprised of seven clinical field sites, a central reproductive hormone laboratory and a coordinating center. The enrollment of 1450 Caucasian, 900 African-American, 300 Hispanic-American, 250 Chinese and 250 Japanese women (n=3150) was completed in 1997.
SWAN will contribute substantive new knowledge on the menopause transition through its prospective design, multi-ethnic/racial composition, representativeness of defined populations, and comprehensive measurement and power. No other recent or ongoing study is in a position to respond to the breadth of identified gaps in scientific knowledge on the menopause transition, either because sample sizes or follow-up data are insufficient, the multidisciplinary data are lacking or are restrictive, or because the samples are homogeneous. SWAN’s four major aims are to: 1) collect and analyze data on demographics, health and social characteristics, race/ethnicity, reproductive history, pre-existing illness, physical activity, health practices as potential predictor variables, 2) elucidate factors that differentiate symptomatic from asymptomatic women during the menopausal transition, 3) identify and utilize appropriate markers of the ovarian-hypothalamo-pituitary axis and relate these markers to menopause-related changes, and 4) elucidate factors that differentiate women most susceptible to long-term pathophysiological consequences of ovarian hormone deficiency from those who are protected. Further description of this initiative is contained in the Geriatrics Program report.
Claude D. Pepper Older Americans Independence Centers (OAICs)
The Claude D. Pepper Older Americans Independence Centers (OAICs) were authorized by Congress to conduct "research into the aging processes and into the diagnosis and treatment of diseases, disorders and complications related to aging, including menopause, which research includes research on such treatments, and on medical devices and other medical interventions regarding such diseases, disorders and complications, that can assist individuals in avoiding institutionalization and prolonged hospitalization and in otherwise increasing the independence of the individuals and programs to develop individuals capable of conducting research in these areas." The term independence, with respect to diseases, disorders, and complications of aging, means the functional ability of individuals to perform activities of daily living or instrumental activities of daily living without assistance or supervision.
OAICs provide support for research to develop and test clinical interventions, and for core laboratories in the basic sciences. OAICs also train individuals in research approaches to develop and test methods of maintaining and increasing independence, and to enhance expertise in aging research through the provision of training in the relevant fundamental scientific disciplines.
The OAICs facilitate research into issues affecting minority populations and also train substantial numbers of minority scientists. For example, in an effort to better understand and improve the health of older ethnic minorities, in particular those older persons of culturally diverse backgrounds with cardiovascular disease, the Harvard OAIC has begun to collaborate with faculty members of two Historically Black Colleges and Universities (HBCUs), the Meharry Medical College in Nashville TN, and Howard University in Washington, D.C. Together with Geriatrician and Physician Educator Dr. Veronica Scott (Director of the Meharry Consortium GEC and the Meharry Program on Aging), and Social Scientist and Gerontologist, Dr. Clarence Brown (Director, Multidisciplinary Center on Aging, School of Social Work, Howard University, and faculty of the District of Columbia GEC), the Harvard OAIC investigators, together with Dr. Sue Levkoff, Senior Investigator of the Harvard OAIC and Director of the Demonstration and Information Dissemination Core (DIDP), are working to: 1) develop and validate culturally competent study instruments for functional assessment in African-American community dwelling elders; 2) develop culturally competent training curricula on treatment of hypertension for primary care providers serving large numbers of African-American, Latino, and Asian families; and, 3) disseminate both locally and nationally the results of the intervention development studies and training curricula to care providers through the Harvard OAIC Demonstration and Information Dissemination Core (DIDP). Additional OAIC achievements are described in the Geriatrics Program report.
Alzheimer's Disease Research Centers (ADRCs) Satellite Diagnostic and Treatment Clinics (SDTCs)
The ADRCs provide a mechanism for integrating, coordinating, fostering and developing the interdisciplinary cooperation of a group of established investigators conducting programs of research on Alzheimer's disease and related dementing disorders of older people. They provide financial, intellectual, patient and tissue resources to support cooperative interactions between a group of projects that have been reviewed and supported on an individual basis, as well as for the development of new research projects.
Efforts to recruit diverse population subgroups including minorities and women must be outlined for each center project. An option to meet this requirement is to establish Satellite Diagnostic and Treatment Clinics (SDTCs) designed to increase the heterogeneity of the research patient pool and to enhance the research capabilities of the ADC by extending the activities of the clinical core. The satellite clinics are not required to conduct research but serve as vehicles for the recruitment, diagnosis and management of AD patients and their families from rural and minority communities, who are then offered the opportunity to participate in research protocols, clinical drug trials and autopsy.
The inclusion of patients with different characteristics assists investigators in providing answers to questions about AD diagnosis, treatment, and management strategies that are likely to be applicable to the broad U.S. population. Additionally, a more diverse patient pool facilitates investigations of the neuropathology and genetics of AD in minority groups as well as studies of care giving and family burden in rural and minority group cohorts. Additional details about this initiative are included in the Neuroscience and Neuropsychology Program report. There are currently 29 ADRCs and 26 satellites.
Despite sustained and sufficient funding, two of NIA’s training initiatives for underrepresented minorities receive few applications and few awards are made. As a result, annual expenditures for the Minority Dissertation Award and the Minority Predoctoral Fellowship Program are low in comparison to the successful minority supplement program. NIA recognized that the dissertation stage of the pre-doctoral career generated expenses that were often beyond the reach of many minority students. In response, the NIA sponsors dissertation awards for minority students. Support for dissertation research on an aging-related problem is provided through a small grant award in amounts up to $25,000 in direct costs for periods up to 24 months with average total award costs of $50,000. Un-obligated funds allocated to this program are often transferred to the minority supplement line. In similar fashion, the Minority Predoctoral Fellowship program encourages students from minority groups that are under-represented in the biomedical and behavioral sciences to seek graduate degrees, furthering the goal of increasing the number of minority scientists who are prepared to pursue careers in biomedical and behavioral research. Predoctoral research trainees receive a stipend of $10,008 per year plus tuition, fees, and other trainee costs that typically average per award about $50,000 total costs.
Averaged annual program costs for fiscal years 1993 through 1998 and by program were: Minority Dissertation Awards, $189,000 (on average 3 active awards per year) and the Minority Predoctoral Fellowship Program, $62,800 (on average 1 active award per year). These costs are contrasted with the successful Minority Supplement Program with average program costs for fiscal years 1993-1998 of $3,146,300. The costs per individual supplement award vary by the level of trainee. It appears that additional ways to better encourage minorities to utilize existing mechanisms should be considered, given the modest to low rates of usage, by expenditures, for the Minority Dissertation Award Program and the Minority Predoctoral Fellowship Program (see report section VIII, Special Populations Initiatives and Outreach Activities, pp_226). Additional information, concerns and issues related to training are presented in Appendix T - NACA Training Task Force Report and under Recommendation 8 - Building capacity and enhancing training and information dissemination.
This Executive Summary presents eight recommendations for action by the NIA that should improve our understanding of how to enhance the health status of minority elders and expand participation by under-represented scientists in aging research. The recommendations build upon the combined experience of the review panel representing decades of accumulated knowledge and experience. The recommendations are diverse but not mutually exclusive and are listed succinctly below:
- Eliminate Health Disparities
- Define Race, Culture, Ethnicity and SES
- Implement Longitudinal and Life-Course Studies
- Integrate Biology, Genomics and Genetics of Aging
- Refine Methods and Strategies
- Improve Recruitment and Retention of Minorities in Clinical Research
- Strengthen and Clarify the NIH Policy on Inclusion of Minorities in Clinical Research
- Build Capacity and Enhance Training and Information Dissemination
Recommendation 1: Eliminate Health Disparities
The disparity in health between socioeconomically disadvantaged citizens and those more advantaged has existed for centuries and continues to this day. These health disparities include differences in disease incidence, prevalence, morbidity and mortality that exist among specific population groups. Disparities are most apparent among populations with varying levels of socioeconomic status (SES). Evidence from hundreds of studies demonstrates a gradient between SES and health status, with individuals of high SES having better overall health than those of low SES. The most striking health differences result in shorter life expectancy, as well as higher rates of most cancers, dementia, diabetes and cardiovascular disease (Marmot, 1999; van Rossum et al., 2000, Smith & Kington, 1997). Some subsets of the population are more susceptible to cellular and genetic damage for a number of reasons, including genetic variability, nutritional status, or the vulnerability of aging organ systems to environmental insult.
Based upon the interests and concerns regarding minority aging research and training among staff in different NIA programs, the Committee urges greater cross-program and cross-institute collaboration on scientific issues of importance in minority aging research.
Recommendation 1a: Continue to disentangle the effects of socio-economic status, environmental exposure, health behaviors, and race and ethnicity status on health.
The relationships among SES, environment, health, morbidity, and mortality have been long and extensively documented but questions still remain. While the overall relationship of SES to mortality may attenuate in older ages, socioeconomic position continues to be linked to the prevalence of disability and chronic and degenerative diseases, including neurodegenerative disease, many cancers, and cardiovascular diseases. Low SES may result in poor physical and/or mental health by operating through various psychosocial mechanisms such as social exclusion, perceived racism, discrimination, prolonged and heightened stress, loss of sense of control, and low self-esteem as well as because of differential access to proper nutrition and to health and social services and different health behaviors. In turn, these psychosocial mechanisms may lead to physiological changes, such as raised cortisol, altered blood-pressure response, and decreased immunity, that in turn place individuals at risk for adverse health and functioning outcomes. Not only may SES affect health, but conversely physical and mental health may have an influence upon the various components of SES (e.g., education, income/wealth, and occupation) over the life course.
Access to health care is an important variable that interacts with SES to influence health disparities. It is noted that studies in industrialized nations having relatively equal access to quality health care, indicate an SES gradient exists in all cause morbidity and mortality. Countries that have universal health care systems, e.g., the United Kingdom and Scandinavia, still experience SES related health disparities. In fact, a landmark study conducted using data from British civil servants demonstrated a health outcome gradient in four income groups. Although all workers had access to the same high quality health care, groups had progressively more positive health outcomes with increasing income level and job status. What is noteworthy about this gradient is that it also exists across middle and upper income brackets of the British civil servant occupation force where there are relatively modest income differences (Marmot, 1999 and van Rossum, et al., 2000).
It is also important to note that individual behavior and lifestyle choices have the potential to contribute to disparate health outcomes across SES strata. However, recent data show that even when individual behavior and lifestyle choices, such as smoking, alcohol consumption, diet and exercise, are corrected for, disparate health outcomes are still observed in lower SES groups. These results shift research emphasis toward other explanatory models and toward an examination of mechanisms by which social and environmental variables may interact with SES to produce health disparities (ES/NIA RFA 00-004: Health Disparities-Linking Biological and Behavioral Mechanisms with Social and Physical Environments).
Recommendation 1b: Efforts should be made to improve knowledge regarding prevalence of and risk factors for Alzheimer’s disease, dementia and other neurological and psychological disorders.
The Reviewers focused attention on selected disease conditions reflected in the President’s health disparities initiative affecting older adults and having significance for the programs of the NIA. Specific recommendations are made relevant to dementias, cancer, cardiovascular disorders and diabetes. The Reviewers were also interested in issues related to sarcopenia and disability.
Despite years of work and several recent reports, consistent information is lacking concerning the rates of Alzheimer's disease, other dementias and other neurological and psychiatric disorders across ethnic and racial groups among subpopulations of the elderly. Existing studies have used different methods of sampling, screening and diagnosis limiting ability to make meaningful comparisons. Efforts should be made to improve comparability among studies by encouraging increased standardization of instruments and methods.
Recommendation 1c: Conduct a review of the Alzheimer’s Centers (ADRC) and Satellite programs to determine participation and research relevance for minority populations.
It is recognized that NIA has made serious efforts to extend the benefits of ADRCs to minority populations. There is some evidence indicating the success of these efforts. Nevertheless, the NIA is encouraged to continue to support efforts to enhance data collection strategies to provide reliable data regarding the rate of Alzheimer’s disease, other dementias, and other neurological and psychiatric disorders in minority populations. Because these efforts may serve as a model for other disease and functional foci, NIA is encouraged to further evaluate the ADC satellite programs. The Satellites should continue to monitor and address questions such as: How many subjects participated in clinical studies; what new research was initiated and in what ways are the Satellites contributing to on-going studies?
Recommendation 1d: Conduct research on the impact of socio-economic status, environmental exposure, health behaviors, race and ethnicity on differences in disease prevalence (cancer and cardiovascular disease), incidence, morbidity and mortality among older population groups.
Recent information from the Institute of Medicine (IOM) addressed the need to abandon traditional, broad racial categories while also calling for research to explain why some members of minority groups are more prone to cancer. The IOM, which advises the government on health issues, urged scientists to abandon the traditional racial categories because they are “of limited utility for the purpose of health research.” Instead, the report urged scientists to study cancer rates among “special populations” to more accurately measure the impact of such things as cultural and behavioral factors, beliefs, lifestyle patterns, diet, environmental living conditions and other factors. The IOM urged increased efforts to determine why members of some minority groups are more prone to develop and die from certain types of cancer (January, 1999).
For example, African American men have unusually high rates of prostate cancer, Asians are more likely to develop stomach and liver cancer than whites, cervical cancer is higher among Hispanic and Vietnamese-American women and Alaska Natives have high rates of colon and rectal cancer. Collecting data on smaller, more specific, ethnic or regional groups may allow researchers, for example, to sort out such things as differences between African Americans living in large cities and those in rural southern communities.
The prevalence of high blood pressure (hypertension) in African Americans is among the highest in the world. Hypertension is found in 71% of African Americans age 60 and older, and in 60% of older Caucasians. The earlier onset and higher prevalence of hypertension in African Americans is accompanied by elevated risk of hypertension-related diseases: an 80% higher stroke mortality rate, a 50% higher heart disease mortality rate, and a 320% greater rate of high blood pressure-related end-stage renal disease than seen in the general population. Helping to unlock the secrets of hypertension has potential to improve life quality, morbidity and mortality, and disability.
In 1999, the NIH identified health disparities as a special emphasis area that allows Institutes to compete for set-aside funds from the Office of the Director. Focus on cancer, cardiovascular disease and associated co-morbidities is responsive to the President’s Health Disparities Initiative, goals of the DHHS Healthy People 2010 Objectives, and the continuing goals of the NIA Geriatrics Programs. An anticipated result of research on health disparities is enhanced understanding of the causes and mechanisms responsible for poorer health among U.S. minority populations.
Recommendation 2: Define Race, Culture, Ethnicity and SES
Recommendation 2a: Continue to work on clarifying the most appropriate definition of and use for the concept of race, culture and ethnicity in aging research.
It is recognized that the interaction among race, culture, ethnicity, socioeconomic status and the environment are related in complex ways to health status. Consequently, the need to clarify the most appropriate roles for these concepts in aging research is paramount.
Medical knowledge and widely accepted medical and other health practices to a large extent have been developed by scientists and practitioners of European heritage, and are largely based on experience with a white majority population. Yet, as our population mix is changing, sensitivity has increased for consideration of, and respect for, cultural and ethnic traditions and differences. Extending both knowledge and practice of cultural diversity is a challenge for researchers.
By 2050 36% of the older population will be comprised of racial and ethnic minority groups. Thus, sensitivity to the influence of race, culture and ethnicity on health behavior and aging is of growing importance (U. S. Bureau of the Census, 1996). Race, ethnicity, and culture are fluid concepts, whose meanings vary and should be understood in a particular social and historical context. They are not biological taxa (Martin & Soldo, 1997). Ethnicity typically is defined as groups whose members internalize and share a heritage of ancestry, language and customs to include social characteristics, cultural symbols, and behavior patterns not shared by outsiders. LaVeist (1994) notes that race is most commonly employed in research as a categorical variable, serving, to some degree, as a marker of homogeneous cultural and social characteristics. It is a proxy variable. LaVeist posits that race actually represents two underlying heterogeneous factors: social factors and individual level behaviors that can be linked to cultural norms. Although they are linked, one can distinguish between ethnicity and culture. Hazuda (1997) defined culture as “a set of meanings (attached to people, words, actions, and interactions) created by social groups in response to shared common experiences” (p. 156). Thus, shared experiences help to determine individuals’ cultures, and members of the same ethnic group may have different cultures due to different experiences (e.g., education, income level, geographic location, etc.). Researchers must be aware that ethnicity and culture are not necessarily equivalent. All variables must be operationally defined.
Recommendation 2b: Improve the working definitions of race, ethnicity, culture and socioeconomic status and encourage standardization across studies.
The work of this Committee has added visibility to the issue of race and health and is an impetus for further discussion, debate, and definition. The Committee remains concerned that race not be generalized or treated as a nuisance variable but that research, descriptive and experimental, includes explicit statements, definitions, and assumptions about race and ethnicity. The Reviewers suggest that NIA support conferences and workshops to help elucidate conceptual meaning and validity of the constructs of race, ethnicity, environment, culture and SES.
Recommendation 2c: Host a conference to initiate a discussion of measuring and explaining cross-racial/cross-cultural differences in health and disease outcomes among various subpopulations.
Investigators must progress beyond the mere stratification on race approach to research. Race is not an essential, scientific category. There are differences of disease risk and disease outcomes within racial and ethnic groups. There are biological and environmental, as well as educational and cultural differences that go unmeasured. It is not appropriate to simply say that there are racial differences without exploring the potential antecedents, etiology, and correlates of observed racial and ethnic differences.
Recommendation 2d: Clarify the goals of the Intramural Research Program’s Baltimore Longitudinal Study of Aging (BLSA) as a means to improve understanding of race and socioeconomic effect on health and effect of health on socioeconomic status.
The Reviewers strongly recommend that the Intramural Research Program (IRP) state clearly how the new efforts to expand racial and socioeconomic diversity of the BLSA-M3 (multi-racial, multi-cultural and multi-generational) will broaden understanding of socioeconomic status and racial/ethnic differences in the rates of disease or the outcomes associated with various interventions. This is especially critical given that the BLSA is a selective, voluntary cohort. Because the design is not population-based, conclusions regarding differences among socioeconomic status and racial and ethnic group issues are particularly problematic. The BLSA is encouraged to proactively develop a strategic plan to address these issues.
Recommendation 3: Implement Longitudinal and Life-Course Studies
Recommendation 3a: Longitudinal, population-based studies are encouraged.
Noting the paucity of information on patterns of adult development and aging in many minority groups, the Committee recommends national surveys and longitudinal panel studies of cognitive, behavioral, and social functioning within these groups. Additional emphasis is placed on the need to disentangle effects of socioeconomic status from other sources of variation, including the effects of systematic discrimination and inequality. One important question to be addressed is: To what degree has a life course of differential treatment (social, psychological, behavioral, health, etc.) of racial minorities led to long-term negative health outcomes in older adults? Or, stated another way, to what degree has race as a phenotypical variable resulted in categorical, negative discrimination and unequal treatment, including health care, among older adults?
The approach used to explore the relationship between socioeconomic status and health should focus on the determinants of health over the life-course. This approach encompasses studies about how health and mortality at older ages relate to genetics, the fetal environment, health-related aspects of childhood, job circumstances and stress in mid-life, and the accumulation of health-related events and stresses that occur throughout life.
NIA has provided leadership in this area and has supported significant science that begins to address difficult questions such as why socioeconomic status and health are so strongly related. More needs to be done to include minority perspectives and issues in longitudinal and life course studies. Those interested in aging and minority-aging research must conduct additional work in the areas of biodemography, secondary analyses of large NIA data sets and promoting access to relevant data sets. Research is critically needed to address causes and dynamics of chronic disease, disability and mortality, and to insure that new cohorts of minorities and new measures are added to large-scale surveys as scientifically justified.
Recommendation 4: Integrate Biology, Genomics and Genetics of Aging
Recommendation 4a: Genetics research is encouraged but with caution and sensitivity.
Over 25 years ago, quantitative genetics became a suspect domain of research, possibly in response to articles, such as Arthur Jensen’s 1969 paper, that addressed genetic differences in intelligence between the races. This research has had reverberations that are still felt today. Scientists may tend to avoid certain types of studies on ethnic and racial minorities for fear of unintentionally indicating that minorities do not perform as well as the majority group. The potential for racial stereotyping arose as a part of this review, particularly related to the validity of race and ethnicity constructs in science and whether future aging research should link race to genetics and genomics, to cognition and personality, and to health outcomes. Concern was also expressed that the lack of a genome or genetic database for cultural and racial groups of all kinds would significantly limit the benefits of the genome project for non-white ethnic groups. One criticism that could be leveled against some of the past research literature is an overemphasis on genetic over environmental influences (Whitfield and Baker-Thomas, 1999).
With trust and some remaining concerns, the Reviewers encourage the NIA to support aging research that attempts to understand how DNA polymorphisms relate to health disparities in ethnic groups. The NIA should establish new research initiatives or cooperative programs to develop a flexible genetic database that could examine allele frequencies by common definition of ethnic or racial group. For example, among Hispanics, who can be of any race, what are the expected frequencies for common alleles? A goal of this research might be to answer the questions: Do minority elderly Hispanic subpopulations age differently, and how might this information help scientists to better understand Hispanic elderly-specific risks for diseases?
Recommendation 4b: Continue research on biological and genetic variations that address the relationships among genetic variations, and social and cultural conditions within and among ethnic and racial minority groups.
Combining longitudinal, population-based studies with genetic analysis could provide particularly powerful tools for understanding race, culture, socioeconomic status and other factors as they influence health and independence. As a first step, questions of racial and cultural differences should be approached using multivariate analyses to disentangle associations and residuals. Further analysis of the residuals might determine what part, if any, is related to biological determinants and whether these determinants have any real explanatory value in understanding the health conditions of interest. For example, the Reviewers discussed and were enthusiastic about possibly identifying and developing compatible databases or cohort population bases on ethnic and racial minorities, such as the Utah Mormons or the Amish.
Recommendation 4c: Support the BLSA in clarifying and extending genetics research to focus on health issues and successful aging across population groups.
The purpose of the Baltimore Longitudinal Study of Aging (BLSA), begun in 1958, is to document the physiologic, biologic, cognitive and psychological changes associated with normal human aging. Each of the more than 1,100 BLSA volunteers visits the Gerontology Research Center at regular intervals to contribute data relating to physiology, biochemistry, psychology, sociology, nutrition, body composition, and health status. The success of the BLSA is contingent upon the willingness of individuals to join and to maintain a long-term commitment to participate over the lengthy course of a longitudinal study. This study has been very successful at recruiting and retaining white, well-educated, middle class and affluent subjects. The participants have an appreciation of clinical research (many are active or retired scientists or professors), can afford the travel expense, provide for child-care if needed, and are in stable employment situations that provide adequate paid personal leave. While successful at recruiting and retaining these participants, the study has had continuing difficulty in diversifying its cohort.
Sociologic and clinical research on the recruitment of under-represented populations provides mostly descriptive information about experiences with various recruitment strategies. While descriptive information is helpful, it does not provide a proven formula or a set of recruitment strategies that should be used to recruit minority and medically underserved research participants. The BLSA is evaluating previous attempts within the BLSA to recruit African American subjects and assessing the effectiveness of ongoing and newly developed recruitment strategies on two levels: (1) understanding and addressing African Americans' attitudes towards research, and (2) evaluating which recruitment strategies were most effective in getting African Americans to join the BLSA. This information will be valuable to intramural and extramural PHS clinical researchers across institutions in their efforts to recruit minority research participants.
A major strategy to improve minority participation and evaluate recruitment strategies is the NIA/Office of Research on Minority Health Medical Research Vehicle that will travel to minority and underserved communities. This vehicle will go to neighborhoods with high proportions of minority elders, to recruit participants into the BLSA using a graduated participant approach.
By establishing an identity in the community, defining an effective and efficient recruitment strategy for minorities and the medically underserved, and developing an informational communication network with local health-care providers, the BLSA will have laid the foundation to develop a plan to address the issue of minority recruitment for NIA prevention and disease-based intervention clinical trials. This deliberate process should bode well for the NIA and BLSA in engaging minorities in future research. The BSLA is strongly encouraged to consider the study of the genetics of successful aging and clarify, for the larger research community, the purposes of its genome project and other invasive studies.
Recommendation 5: Refine Methods and Strategies
Recommendation 5a: Support research to improve methods and strategies for conducting research with minority populations.
America’s older adult population represents the broadest array of ethnic, racial and cultural diversity ever witnessed in American society (Burton, Dillworth-Anderson & Bengston, 1992). The diversity of this group is prompting a reevaluation of the applicability of existing research methodologies to the study of older minority populations (Whitfield & Baker-Thomas, 1999; Markides, Liang & Jackson, 1990). To date, most of the research on race, ethnicity, culture, and the elderly is designed to examine between group differences in aging processes. This methodological strategy has generated a considerable body of literature in comparative research on the elderly. It has not, however, provided insights on the degree to which within-group variability contributes to observed differences between groups (Whitfield & Baker-Thomas, 1999).
Race, ethnicity, culture and aging can create significant individual variability in cross-sectional examinations as well as in studies of longitudinal trajectories. The challenge to scientists is to disaggregate the sources of individual differences and patterns, shared and unique, across various ethnic/racial groups. Identifying contributions to individual variability with thoughtful and deliberate consideration of within-group designs aids in understanding reasons for differences between groups and not merely the identification of differences (Whitfield, 1999).
Codifying the best strategies for research on ethnically and culturally diverse sub-groups of the population is not an easy task, and there is no single best approach agreed upon by all. The Reviewers recommend support of research to improve methods and methodology in studying minority aging issues. Particular attention should be directed to within-group variability, validity of measurements, recruitment and retention methods to include ethical issues, multivariate analysis and the research potential in developing compatible databases.
Recommendation 5b: Improve instruments and methods, including standardization across populations to study cognitive disorders and mental health decline in minority populations.
Few data exist to understand the consequences of chronic brain disorders across and within ethnic or racial groups, and limited data exist to understand the social and economic differences on survival with chronic brain diseases. Several years ago, a number of investigators worked to establish methods to measure cognitive function and functional independence in everyday life. Little of that information has found its way into the literature. Socioeconomic status, education and ethnicity each produce variation on these measures. Thus, the causes of these group differences and their meaning remain a mystery.
Recommendation 5c: Improve scales and instruments for use across older population groups.
A recurring issue of great concern is the validity of scales and measures across population groups. We recommend that the NIA implement studies to determine validity and support standardization of existing measures and to develop new measures where necessary. The Reviewers are concerned about the proliferation of current practices using different cut-offs for the same test or using race/ethnic specific tests.
Recommendation 6: Improve Recruitment and Retention of Minorities in Research
Recommendation 6a: NIA is encouraged to support research to improve strategies for recruitment and retention of minority elders in research with goals of hypothesis testing.
The NIH Revitalization Act of 1993, Public Law 103-43, addresses issues of the recruitment of women and minorities and their subpopulations in all clinical research studies, especially clinical trials.
The Reviewers suggest that the NIA conduct a national conference on developing methods (recruitment, retention, data analysis and within group analyses) and questions for the study of aged minorities. The NIA should also encourage empirical studies on ethics of research among culturally diverse elders to include informed consent processes and best practices. Further, investigations that bridge different approaches to studying ethnicity and culture among older persons and populations should be encouraged. The experiences of researchers in NIA’s ongoing efforts, including the RCMARs, Pepper Centers and ADCs would be useful for this conference.
Information is needed to aggressively pursue the identification of existing, empirically-based studies that improve understanding of the recruitment and retention of older minority persons, with special emphasis on documenting effective strategies that may be employed in future studies. Investigators continue to encounter problems in recruiting and retaining minorities in clinical trials and great effort, much of it by trial and error, has been expended in trying to determine best practices.
Recommendation 6b: Assist the NIH to clarify the process of monitoring the inclusion of minorities in clinical studies.
Public law requires that in addition to the continuing inclusion of women and members of minority groups in all NIH-supported biomedical and behavioral research involving human subjects, the NIH must:
- Ensure that women and members of minorities and their subpopulations be included in all human subjects research;
- For Phase III clinical trials, ensure that women and minorities and their subpopulations be included so that valid analyses of differences in intervention effect can be accomplished;
- Not allow cost as an acceptable reason for excluding these groups; and,
- Initiate programs and support for outreach efforts to recruit these groups into clinical studies (Federal Register, 1994, p. 14508).
The current NIH tracking system is limited in its design. The system tracks, on an annual basis, cumulative enrollment data by gender and ethnic/racial group. The system does not, nor was it designed to, address issues of retention or intent to analyze the data by sub-groups. Further, there is not a system of data checks to ensure the quality of the data submitted by the principal investigators or entered by technicians into the central tracking system.
Recommendation 7: Strengthen and Clarify the NIH Policy on Inclusion of Minorities in Clinical Research
Recommendation 7a: Seek to change the NIH implementation of the policy on inclusion of women and minorities in clinical research.
Panel members voiced concern that NIH is implementing the policy on recruitment of minority participants inappropriately. The standard in use is one in which applications are assessed based on their intent to recruit minority participants. The standard needed is whether minority participation is addressing scientifically important questions. The panel urged NIA to take the lead in seeking change in the implementation of this policy.
There is a need to strengthen the process of reviewing research applications by drawing reviewers’ attention to the advantages (for much but not all research) provided by inclusion of minority populations. Currently, applications must specify if the research includes minorities. This obligation is often viewed---by both applicants and reviewers---as a bureaucratic or political requirement. However, the inclusion of minority populations can and should be considered as a research opportunity. By studying differences among diverse populations, much can be effectively learned about improving health and quality of life of older people, about understanding healthy aging processes, and about reducing health disparities among older persons and populations.
The Committee recommends that NIA encourage reviewers to explicitly consider, as a standard review criterion, the scientific benefits of research provided by inclusion of minority populations. The Scientific Review Office of NIA is a plausible site for testing this strategy. Further, this idea must be vetted broadly across NIH.
Recommendation 7b: The NIH and Office of Research on Women’s Health (ORWH) are encouraged to design a system for tracking inclusion of women and minorities in clinical research that will include recruitment and retention data as well as data that tracks the performance of investigators in meeting the mandate and intent of public law.
As the tenth anniversary of this public law approaches, the NIH and ORWH have an opportunity to carefully evaluate the design features of the current system and to implement changes. The Committee and the NACA suggest revisions to the system that consider reporting inclusion data at one point in time. The end of the study is suggested. Further, data across the NIH should be reported by grant mechanisms given the importance placed on research project grants and Centers. The re-vamped system must consider methods for ascertaining the effect on data reporting of long-term subject inclusion in clinical studies. Finally, an effort most be made to make clear to the public and Congress, the questions being addressed by inclusion data.
Recommendation 8: Build Capacity and Enhance Training and Information Dissemination
In order to implement the previous recommendations, a diverse, well-trained workforce is required. Capacity building in minority aging research is a long and arduous process. The development of trusting relationships and dependable resources requires a long-term and consistent commitment.
Recommendation 8a: Devote resources to facilitating networks of scholars focusing on minority issues and to conferences focusing on common issues in career development.
Despite the existence of several NIA- and NIH-supported programs to increase the participation of minority students in research, minority researchers continue to be under-represented in most fields of biomedical and behavioral research on aging. This underrepresentation limits the cultural and ethnic diversity of the research workforce as well as the important perspective that comes with such diversity.
The NIA is redressing this imbalance through developing and enriching existing efforts by organizations to recruit minority students to research. The NIA is supporting collaborations that link faculty and staff in different institutions who have the common interest of furthering minority participation in research careers. The goal of such initiatives is to increase the cultural and ethnic diversity of the research workforce on aging.
NIA has made an important effort in this area and is encouraged to replicate successful models from within the NIA and across the NIH. In 1998, the NIA implemented an initiative entitled “Networks to Enhance Minority Recruitment to Aging Research” and is supporting four grantee organizations: The Gerontological Society of America (GSA), The American Psychological Association (APA), Mercy College and the University of Michigan/Wayne State University. The GSA and APA have distinguished histories in supporting training of future scientists, and the remaining two sites are favorably aligned with established resource center projects at Columbia University and the University of Michigan/Wayne State University. The long-range goal for the RCMARs is to decrease the minority/non-minority differential in health and its social sequellae for older people by focusing research upon health promotion, disease prevention, and disability prevention. To meet the long-range goal, RCMARs were required to create a research infrastructure around three objectives: (1) to establish a mechanism for mentoring researchers for careers in research on the health of minority elders; (2) to enhance diversity in the professional workforce conducting research on the health of minority elders; and (3) to develop and deploy strategies for recruiting and retaining minority group members in epidemiological, psychosocial, and/or biomedical research dealing with the health of the elderly. For further description of these initiatives, the reader is directed to Section VII of the background of this report, Behavioral and Social research report, page 70.
Recommendation 8b: The Institute is strongly encouraged to commit to long-term support of the Resource Centers on Minority Aging Research (RCMARs).
In order to reduce health disparities among older minority and non-minority persons, the NIA’s investment in building required capacity and infrastructure must be stable, continuous, and appropriately supported. In this regard, support for the successful RCMAR program that encourages mentors, junior investigators, and related research support should be increased over 5 years from its current level of $500,000/year (total costs) to a minimum of $750,000/year direct costs, commensurate with the program’s scope and challenge. Commitment to further out-year support of this program is encouraged. Renewal must be competitive to encourage program vigor and productivity.
Recommendation 8c: Continue to support, develop and expand existing mechanisms for developing scientists focused on topics relevant to the aging of minority subpopulations.
Effectively addressing the most complex and intractable health problems of aging minority populations will be impossible without an expanded workforce of focused scientists with excellent research skills addressing issues of health disparities. Further development of the minority aging research portfolio across NIA programs must be accompanied by increases in training opportunities to encourage minority scientists and others to focus on topics relevant to the aging of minority subpopulations. Criteria might be developed such that institutional training grants can be partly evaluated by the extent to which they train underrepresented and minority trainees. The NIA is encouraged to be proactive in educating faculty at minority institutions about training grants and training opportunities.
NIA can make important progress by replicating and expanding existing successful programs. Factors that make NIA programs inaccessible or undesirable to potential trainees must be evaluated and addressed. The Minority pre-doctoral training initiative is outstanding conceptually and more must be done to disseminate information about this award. We also encourage the NIA to announce training priorities related to topics of health disparities.
NIA is commended for its successful supplement program and efforts to fund minority scientists travel awards to conferences and workshops (see for example BAP Research and Training Opportunities, Volume Two). More must be done to support researchers working at universities that have not traditionally been funded by NIA.
Recommendation 8d: Support Mentoring of New Investigators.
Due to historical, systematic exclusion, minority investigators may particularly benefit from a variety of mentors in the areas of research, administration, and teaching. A formal process of multi-mentoring may better ensure that minority scientists are allowed to pursue research activities without undue burdens of student counseling, committee membership, heavy teaching loads, clinical assignments, and speaking invitations. The concept of a multi-mentoring process could be expanded to include a mentor outside the institution for overseeing the mentees' broader career program development. A multi-mentoring process may also be beneficial for senior female minority mentors, a group that is very small and often particularly overburdened.
Multi-mentoring may also be useful as investigators transition to different levels of research independence. In this scenario, emphasis is placed on research career entry, moving to a tenured academic scientist position, and graduation from special initiatives, such as the small pilot research grant (R03) or a minority supplement to a traditional research project grant (R01). The NIA is encouraged to explore innovative strategies to support mentors and mentees as they progress in complexity of research mechanisms and complexity of academic roles. Consideration must be accorded the time and effort that mentors give, without remuneration, to mentees’ research career and development.
As competition for the “best and the brightest” escalates among training programs and science disciplines, it is recommended that the NIA cast a wider net for research trainees and support a broader, more inclusive definition of aging-related research to include disciplines not historically considered part of gerontology such as bioinformatics, computer sciences, and engineering. As research advances in technology, recruiting highly technical disciplines to aging research should bode well for innovations in these areas.
Recommendation 8e: Expand physician scientists opportunities.
In an effort to make aging more appealing to medical students and physicians, the NIA is advised to consider strategies that will expand opportunities for physician scientists. The mechanism of expansion could be the minority pre-doctoral fellowship to include medical students. The period of support would need to be increased and a suggested range of 24-36 months (pre-doctoral clinical years) could be accommodated in the existing structure. Continued support of physician scientists and clinical investigator awards are encouraged.
Recommendation 8f: Disseminate information.
Aging information can be a powerful tool in convincing new and minority scientists of the merits of a career in aging research. Strategies to better share knowledge of advances in aging research should be developed as an adjunct to other infrastructure development. A proactive strategy of communication with Historically Black Colleges and Universities (HBCUs), Hispanic Serving Institutions, Tribal Colleges and other predominantly minority serving institutions is warranted.
It is obvious that the NIA has exerted considerable leadership in establishing informal collaborations with Historically Black Colleges and Universities (HBCUs) and others through regional meetings, site visits, co-sponsorship agreements as well as technical assistance workshops. The time is right for the NIA to establish formal collaborations with HBCUs and other minority colleges and universities on issues of health disparities. It is advised that these formal collaborations utilize existing Centers programs, career (K) development initiatives, and MARC- and MBRS-supported scientists and students.
This review of minority programs at the NIA was prompted by the coming demographic revolution in the numbers of older minorities, as well as a concern with finding the most effective and efficient use of limited resources in the future. Thus, this review coincided and overlapped with the strategic planning process recently concluded by NIA. A review of the period 1993-1998 revealed a number of major initiatives and programs directly addressed to older minority populations. For the most part, this review documented that NIA has justifiably earned a reputation as an innovator in minority research. Across most of the program areas of NIA the review revealed active research portfolios on issues relevant to minority aging. While none of these was of a sufficient size and scope to answer the multitude of questions relevant to minority health, ongoing RFAs, PAs and special initiatives are directed toward these issues and NIA has made substantial efforts to develop innovative programs and strategies.
The review group concluded that research in minority aging is of sound scientific value. Questions that may arise from research on aging within and among minority groups are of value in and of themselves, but may also contribute to larger scientific advances. The committee rejected notions of biological essentialism in the concepts of race and ethnicity, while simultaneously acknowledging the importance of studying individual genetic variation, gene-gene interaction, and environmental-genetic interactions related to ethnic and minority group status. While noting the importance of phenotypical similarities within some groups designated as racial or ethnic, no support currently exists for significant biological differences that affect health and aging along these same phenotypical divisions. Thus, while some isolation historically may have contributed to ethnic or racially bounded diseases and conditions (e.g., sickle cell anemia), the inter-mixing among previously historically isolated groups means that there is no proof that the genetic substrate that contributes to observable phenotypical similarities within, and phenotypical differences between, groups is necessarily related to fundamentally important genetically determined biological similarities and differences in health and disease within and among racial and ethnic groups. The lack of clear, biological definitions and clarification of boundaries between groups are examples of a major problem in accepting the notion of ethnic or racial group biologically bounded health conditions or processes. Most of what we observe in differences among racial and ethnic groups is the product of histories of cultural values, institutional practices, and political decisions linked to phenotypical differences among groups. It is these factors, perhaps in concert with biological risk and protective factors, linked to ethnic and racial minority statuses, that are most worthy of study. In sum, the growing numbers among ethnic and racial minority groups demand increased attention to the biological, social, environmental and cultural factors that may contribute to group-based difference in the aging process, especially in healthy and effective functioning.
The recommendations listed in this section of the report reflect the general concern with understanding aging related processes among and within racial and ethnic groups. The recommendations recognize the special historical circumstances that place minority groups in their current disadvantaged circumstances, and propose a number of direct remedies to address the lack of resources in research and training directly targeted to these groups. For the most part, the recommendations stress the need for research that moves our understanding of biological risks and protective factors to the obvious environmental, cultural, social, and economic factors that mediate and moderate observed health and effective functioning. The recommendations call for more basic science research as well as longitudinal, panel studies of normal aging related processes among and within these groups. The paucity of attention to definition, assessment and measures of cognitive, physical, and mental functioning among racial and ethnic groups is noted in the specific recommendations, with a clear call for the development of mechanisms, e.g. conferences, workshops and research initiatives, that address the important conceptual and methodological needs in this area. The recommendations laud existing mechanisms of support, and call for even more concerted mechanisms to support these research efforts. The recommendations note the importance of training mechanisms, special awards, and related efforts directed specifically toward minority institutions, as well as ongoing dissemination activities among NIA staff. Essentially, while the NIA’s efforts have been effective, the report notes the need for broader programming and more resources to be devoted to the development of new cohorts of minority investigators in aging.
Finally, the recommendations and report note the necessity of improved integration of research and training directed to the health needs of our growing racial and ethnic populations with the development of general planning of research and training at NIA as a whole. Research and training directed to ethnic and racial minority factors in aging should not be an appendage to ongoing research and training efforts. Instead, research in these areas should be viewed as essential, basic, and an integral part of research and training at NIA more generally. Thus, the report lauds the new strategic plan and notes the need for ongoing yearly planning and constant vigilance from the NIA leadership to guarantee this integration. This is crucial to the development of a useful, broad portfolio of health research, and the training of an ethnically diverse new cohort of scientists working on the health of the new aging populations of ethnic and racial minority groups.
Advisory Board to the President’s Initiative on race (1998). One America in the 21st Century: Forging a New Future. Washington, DC: U.S. Government printing Office.
American Anthropological Association (1996). Statement on Race. Worldwide Web (www.aaanet.org/stmts/racepp.htm).
American Association of Physical Anthropologists (1996). AAPA Statement on Biological Aspects of Race. American Journal of Physical Anthropology 101:569-570.
Burton, L.M., P. Dilworth-Anderson and V.L. Bengston. (1992). Creating new ways of thinking about diversity and aging: Theoretical challenges for the twenty-first century. Generations 15(4): 67-72.
Council of Economic Advisors. (1998). Changing America: Indicators of social and economic well-being by race and Hispanic origin. Washington, DC.: U.S. Government printing Office.
Freeman, H.P. (1998). The meaning of race in science – considerations for cancer research: concerns of special populations in the National Cancer Program. Cancer 82:219-225.
Harding, S. (1998). The meaning of race in science – considerations for cancer research: concerns of special populations in the National Cancer Program – direct quote. Cancer 82:221.
Hazuda, H.P. (1997). Minority issues in Alzheimer’s disease outcomes research. Alzheimer’s Disease and Associated Disorders 11(Suppl. 6): 156-161.
Institute of Medicine. (1999). Committee on Cancer Research Among Minorities and the Medically Underserved. The unequal burden of cancer, an assessment of NIH research and programs for ethnic minorities and the medically underserved. Washington, D.C.: National Academy Press.
LaViest, T. (1994). Beyond dummy variables and sample selection: What health services researchers ought to know about race as a variable. Health Services Research 29:1-16.
Markides, K.S. J. Liang and J.S. Jackson. (1990). Race, ethnicity and aging: Conceptual and methodological issues. Handbook of Aging and Social Sciences. New York: Van-Nostrand-Reinhold.
Marmot, M. (1999). Epidemiology of socioeconomic status and health: are determinants within countries the same as between countries? Annals New York Academy of Sciences 896:16-29.
Martin, L.G. and B.J. Soldo (1997). Racial and Ethnic Differences in the Health of Older Americans. Washington, D.C.: National Academy Press.
Miller, B.A., L.N. Kolonel, L. Bernstein, J.L. Young Jr., G.M. Swanson, D. West, C.R. Key, J.M. Liff, .S. Glover, and G.A. Alexander, eds. (1996). Racial/Ethnic patterns of cancer in the United States 1988-1992. Bethesda, MD: National Cancer Institute.
Manson, S. (2000). Legal definition of American Indian – Personal Communiqué. Denver, CO: University of Colorado Health Sciences Center.
National Center for Health Statistics. (1998a). Current estimates from the National Health Interview Survey, 1995. Vital Health Statistics Series No. 10 (199). Hyattsville, MD: U.S. Public Health Service
National Center for Health Statistics. (1998b). Health, United States, 1998 with Socioeconomic Status and Health Chartbook. Hyattsville, MD: U.S. Public Health Service
National Institute on Aging. (1997). Information on the National Institute on Aging – Resource Guide. Bethesda, MD: NIA Office of Planning, Analysis and Evaluation.
Office of Management and Budget (1997). Revisions to the standards for the classification of federal data on race and ethnicity. Federal Register, Vol.62 (210), 58781-58790.
Pinn, V.W., A. Bates, and C. Roth. (1998). Implementation of the NIH Guidelines on the Inclusion of Women and Minorities as Subjects in Clinical Research: Comprehensive Report, Bethesda, MD, NIH Office of Research on Women’s Health.
Smith, J.P. and R.S. Kington. (1997). Race, socioeconomic status, and health in late life. In: Racial and Ethnic Differences in the Health of Older Americans. L.G. Martin and B.J. Soldo, eds. Washington, D.C.: National Academy Press.
Stern, M.P. and Haffner, S.M. (1990). Type II diabetes and its complications in Mexican Americans. Diabetes Metabolism Review, 6:1437-1439.
U.S. Bureau of the Census. (1996). Current Population Reports, Special Studies, P23-190, 65+ in the United States. Washington, D.C.: U.S. Government Printing Office.
U.S. Bureau of the Census. (1993). Profiles of America’s Elderly, Current Population Reports, (November 1993), Washington, D.C.: U.S. Government Printing Office.
U.S. Bureau of the Census. (1993). U.S. Population Estimates, by Age, Sex, Race, and Hispanic Origin: 1980-1991, Current Population Reports, P23-1095, (November 1992), Washington, DC, U.S. Government Printing Office.
Van Rossum, C.T., M.J. Shipley, H. van de Mheen, D.E. Grobbe, and M.G. Marmot. (2000). Employment grade differences in cause specific mortality. A 25-year follow-up of civil servants from the first Whitehall study. Journal of Epidemiology and Community Health 54(3): 178-184.
Waitzman, N.J., and K.R. Smith. (1998). Phantom of the area: Poverty-area residence and mortality in the United States. American Journal of Public Health 88: 973-976.
Whitfield, K.E. and T.A. Baker-Thomas. (1999). Individual differences in aging among African Americans. International Journal of Aging and Human Development 48(1): 73-79.
Whitfield, K.E. (1999). The use of quantitative genetics to study aged African Americans. In: Jackson, J.S. (ed.). Black American Elderly (pre-publication version).
Williams, D.R., R. Lavizzo-Mourey, and R.C. Warren. (1994). The concept of race and health status in America. Public Health Reports. 109:26-41.
Appendix A: NIA Strategic Plan Research Goal C: Reduce Health Disparities Among Older Persons and Populations
Health disparities are associated with a broad, complex, and interrelated array of factors. Risk factors, diagnosis, progression, response to treatment, caregiving, and overall quality of life may each be affected by aspects such as race, ethnicity, gender, socioeconomic status, age, education, occupation, and as yet unknown lifetime and lifestyle differences. For example, a recent multi-ethnic epidemiologic study indicated that prevalence rates for Alzheimer's disease might be higher for African-Americans and Hispanics than for other ethnic groups. Another study found a striking relationship between socioeconomic status, health, and longevity. Causes of such results require in-depth research. Understanding these differences and interactions is critical for developing behavioral and public health interventions to reduce burdens of illness and
increase quality of life.
Subgoal 1: Increase Active Life Expectancy and Improve Health Status for Older Minority Individuals.
In the next half century, the proportion of racial minorities and Hispanics among the elderly population is expected to increase rapidly and become more diverse. Life expectancy at older ages has increased significantly in the last quarter century for all major racial groups, although there are disparities. Marked differences among these racial and ethnic groups exist in “active life expectancy,” the average number of years lived without a limiting disease or disability. Improved diagnosis and treatment of major medical conditions have led to growth in the number of persons living with one or more chronic conditions which impact not necessarily on the length of life, but on the quality of life. Genetic, lifestyle, and socioeconomic factors also play an important role in the severity or time of onset of disease and disability. It is important to understand the special needs of minority elderly persons in order to design appropriate interventions to improve health status and quality of life for all older persons.
Subgoal 1a. Analyze disease prevalence and course in minority populations and sub-populations.
The prevalence of many diseases, including heart disease, hypertension, diabetes, Alzheimer’s disease, and certain types of cancer, vary significantly among minority populations. For example, blacks suffer from hypertension and prostate cancer at higher rates than their white counterparts, while Hispanics have more diabetes and less heart disease. We still do not understand all of the factors involved in these health disparities. Differences in the prevalence of Alzheimer’s disease in blacks and Hispanics compared to non-Hispanic whites may be related to socioeconomic factors, including education, language, and access to health care, biological factors such as the higher incidence of cardiovascular disease in African-Americans, and genetic factors such as different prevalence of risk factor genes in these populations.
Different prevalence or frequency of declines in cognitive function have been observed among populations. This may in part be due to stress-related diseases, such as hypertension, cardiovascular disease, and diabetes. Despite the substantial evidence that these diseases affect cognitive functioning, there are scant relevant data examining minority and ethnic populations. Future research will focus on studies of cognitive functioning, health behaviors, and disease processes in minority populations using culturally-equivalent and standardized measures, to better understand these differences and to suggest appropriate interventions.
Research will also focus on determining the factors contributing to the differences in the prevalence of Alzheimer’s disease among different racial and ethnic populations. For example, Japanese-Americans living in Hawaii have lower prevalence of stroke-related dementia and higher rates of Alzheimer’s disease than do Japanese nationals. Data are needed on the specific incidence and prevalence rates in different ethnic sub-populations as well as the distribution of subtypes of dementia, genetic and environmental risk factors, and differences in care giving.
Subgoal 1b. Increase inclusion of minorities/sub-populations in research.
Historically, members of minority populations have been under-represented in clinical trials. There are many difficulties associated with enrollment of minority individuals in research studies and clinical trials. Cultural and language barriers must be overcome, as well as finding ways to inform individuals of the studies and trials that are available and their potential benefits for improvements in health. Outreach efforts, such as involving church and community organizations in emphasizing the importance of medical research and in recruiting study participants, is very important for minority elderly. Research on improving strategies to include minorities in research as well as direct efforts to recruit minorities to clinical studies are underway.
Subgoal 1c. Develop preventive and interventional strategies for healthy aging appropriate for diverse populations.
In order to prevent or lessen the effects of disease, interventions must be designed that are culturally appropriate. For example, minority elderly individuals are more likely to use their medication appropriately if the labels and instructions are printed in their native language. Interactions with health care professionals can be difficult if there are language and cultural barriers. In order to diagnose Alzheimer’s disease in minority elderly, assessments of cognitive impairment must be designed for individuals with low levels of education or lack of fluency in English.
Future research will focus on strategies for self-management of chronic diseases such as arthritis, heart disease, lung disease, and diabetes. Research will also investigate the factors affecting medication misuse and strategies for enhancing proper use and compliance with medication regimens.
Subgoal 1d. Improve culturally appropriate health care delivery.
Communication with health care professionals can be a problem for many Asian, Hispanic, and other elderly who come to the U.S. with a wide variety of educational and language skills. Often family members or friends must act as interpreters for the elderly individual in order to communicate symptoms and health care instructions between the patient and the health care provider. If the elderly individual is hospitalized or placed in a nursing home, communication becomes a critical issue in assuring appropriate health care.
Recent studies reveal that how older people are diagnosed and treated is as much a function of who they are, who is treating them, and where care is provided, as a function of the symptoms they present. Future research will focus on enhancing the quality of health care encounters to reduce health disparities associated with poor provider-patient interactions.
Subgoal 1e. Develop strategies for information dissemination.
Because of language, educational, and cultural differences, many minority elderly individuals are not getting the information they need about healthy lifestyle behaviors. Community and religious organizations may be helpful in disseminating information. Public service advertisements can also be useful if specifically designed for foreign language newspapers, cable television, and radio. Research is needed to better understand effective strategies for communicating health messages.
Subgoal 1f. Improve health behaviors and health promotion strategies.
Studies targeted to enhancing healthy behavior in older racial and ethnic populations are a high priority. Efforts to reduce disparities through this research will include development of culturally appropriate screening tools and health care services, as well as means to enhance the likelihood of elders initiating and maintaining health promotion interventions.
Subgoal 2: Understand health differences associated with race, ethnicity, gender, environment, socioeconomic status, geography, and culture.
There are many complex and interacting factors related to race, ethnicity, gender, environment, socioeconomic status, geography, and culture that can affect the health and quality of life of elderly individuals. These factors can influence work history, diet, exercise, the use of preventive health care, and the individual’s role in the family and community. There are also biologic and genetic factors that can affect the course and severity of disease and disability. All of these factors must be understood in order to design interventions to improve health and quality of life.
Subgoal 2a. Study normal aging processes in special populations.
In order to understand the course of disease and disability, it is necessary to understand “normal” aging, those processes that occur in the absence of disease. We know that the prevalence of certain diseases varies among racial and ethnic populations, but very little is known about the normal processes of aging in minority populations and the similarities and differences among racial and ethnic groups, and among groups that differ on other characteristics such as geography.
Subgoal 2b. Determine the effects of early life factors on adult health.
We know aging is a lifelong process in which early life events can play an important role. Differences in nutrition, education, disease incidence and health care early in life and in fetal development can impact on disease and disability in later life. Because of the wide variety of racial, ethnic and national backgrounds in the minority elderly population, we can learn much about the impact of early life events on how well these individuals age. Research into the influence of early and mid-life experience on aging health will also improve our ability to predict health status of future cohorts of elders.
Subgoal 2c. Develop necessary data related to health differences and causes.
Because of the complex and interactive nature of racial, ethnic, cultural, and socioeconomic variables, there is a lack of data that adequately addresses differences in health among racial and ethnic populations. More sources of data collection are needed on a national level, as well as finding ways to analyze different smaller data collection efforts. One solution could be the use of “linked data” to discover new scientific knowledge and to help in the evaluation and design of policies to deal with an aging society. Data from several sources could be linked by some common identifier and analyzed in ways not previously possible. At the same time, the use of linked data presents a complex set of challenges to maintain the confidentiality of survey respondents.
Ongoing data collection programs, such as the Current Population Survey, the National Health Survey, and the Survey of Income and Program Participation, oversample minority persons in order to provide important information on living arrangements, income, health care needs, and other topics.
Other surveys focused on specific groups include the Hispanic Health and Nutrition Examination Survey, sponsored by the National Center for Health Statistics in 1985, the Hispanic Established Population for Epidemiologic Study of the Elderly (EPESE), the Health and Retirement Study, and the Assets and Health Dynamics of the Oldest-Old have concentrated on issues of illness and well-being. Support for these and other surveys of racial and ethnic groups will be continued and expanded in order to provide adequate data for researchers and public policy makers.
Subgoal 2d. Promote clear and functional definitions of race, culture, and ethnicity.
Race, culture and ethnicity can be difficult to define as the elderly population becomes more diverse. For example, black immigrants from Africa can have different languages and cultures compared to African-Americans and blacks of Caribbean ancestry. Asians can be individuals from China, Vietnam, Japan, Korea, or other nations, each with individual languages and cultures. Hispanics as a group are particularly diverse with different racial as well as cultural heritages, including American Indian, black, and white, depending on their country of origin or region of the U.S. in which they live. For research purposes it is important to have clear, consistent ways to define race, culture and ethnicity in order to identify those factors that impact on health and allow comparison of data among different research studies.
Subgoal 2e. Determine the relative influences of race, ethnicity, economic status, education, and work experiences in health.
Health and quality of life, particularly in later years, are attributable to many factors, some of which influence one another. To better understand risk factors for disease and preventive factors leading to good health, research is needed on separating the influence of each factor and understanding how they work together. Longitudinal data with a life span approach are particularly important to disentangle and better understand the multitude of factors that affect health and well-being.
Subgoal 3: Monitor health, economic status, and life quality of elders and inform policy.
Socioeconomic factors including work, retirement, education, income, and wealth can have a serious impact on the health and well-being of minority individuals. Economic circumstances can determine whether an individual can afford health care and proper nutrition from early life into old age. Individual and family financial resources and health care insurance can determine whether an older individual enters a nursing home or stays at home to be cared for by family and friends. We still do not fully understand the interaction of financial assets and health outcomes, particularly in different racial and ethnic groups.
Compared to their white counterparts, minority elders as a group depend more heavily on Social Security, receive little support from private pensions, derive less income from accumulated assets, and rely to a large extent on earnings from employment in old age. For minority elders it is of prime importance to ensure the availability of Social Security for low income individuals and to improve access to private pensions. Challenges for policy makers also include finding ways to encourage individual savings, including home ownership, and facilitate continued employment.
Subgoal 3a. Study over time population changes and underlying causes of health and function of elders.
Many studies have identified significant risk factors for the development of chronic diseases that pre-date onset of symptoms by at least a decade. Population-based studies in which individuals are tracked from birth to their adult death help researchers understand the changes in health over time, and the large variations in health across racial and ethnic populations. Research will continue to develop, maintain, and analyze longitudinal data sets.
Subgoal 3b. Provide information useful for policy.
NIA is currently supporting the Health and Retirement Study, a nationally representative longitudinal data collection that examines retirement, economic, and family variables as they relate to health of the elderly. These studies provide data for researchers, policy analysts, and program planners who make major policy decisions affecting retirement, health insurance, saving, and economic well-being. Future studies will focus on health (physical, cognitive, and functional), dementia, economic and family resources, and care arrangements.
Recent findings of reduced disability among the elderly have become prominent in the public policy debate regarding Medicare and Social Security. Future research is needed to evaluate whether disability is being prevented or postponed, to identify contributors to disability decline, and to determine the impact of changes in health care, and to examine the economic implications of reduced rates of disability.
Subgoal 3c. Produce data on burdens and costs of illness, healthy life expectancy, longevity, and mortality trajectories.
Determining the costs of specific illnesses has always been difficult due to the lack of adequate data on incidence and prevalence, as well as the different methodologies and assumptions used by scientists in calculating direct medical costs and indirect costs such as lost wages and family and informal caregiving support. All of these difficulties are compounded in minority populations due to differences in the use of formal medical care and informal family caregiving. Future projections of healthy life expectancy, longevity, and mortality depend on assumptions on how cohorts of individuals will change over time, particularly as recent immigrants are assimilated into the American Melting Pot. Research will provide valuable information for projecting the need for health care services for all population groups.
Subgoal 3d. Monitor population aging and the global burden of disease.
Population aging is not unique to the United States. As advances in sanitation, nutrition, and medical care are spread over the world, the global burden of disease has been shifting from infectious diseases to diseases of more industrialized societies, including heart disease, hypertension, diabetes, and cancer. The perspective of international studies helps increase understanding of American population aging through comparison with that of different systems.
Although many of the disparities in adult health and life expectancy across nation, county, race, occupation, and social class, are well documented, causal mechanisms are less well understood. Understanding these differences is critical for developing behavioral and public health interventions. Future research efforts will focus on developing better cross-national and sub-national databases on health outcomes, risk factors, and SES structural factors, such as societal inequality.
The public comment period for the Strategic Plan ended in December 1999 and a final plan was submitted to the NIH leadership. It is anticipated that the Strategic Plan along with this report will present an inclusive agenda for action in addressing domestic health disparities in older adults.