Building capacity and competency in conducting health disparities research

Abstract

The war on the elimination of health disparities is a complex, persistent, and long-term commitment to ensure that all Americans have equitable access to the contributors of good health and experience comparable health outcomes. Considerable research, at great cost, has begun to shed light on the biomedical factors that contribute to the conditions that disproportionately affect people of color, including heart disease, stroke, HIV/AIDS, diabetes, and certain cancers. However, the morbidity and mortality rates, when tallied for these and other conditions, continue to reflect outcomes that differ by ethnicity and socioeconomic classification. Interestingly, these adverse health outcomes are inextricably linked with lifestyle choices, personal decisions, resources, and environmental factors and are influenced by culture, history, and values. Although we know a great deal about etiology and treatment of diseases, we struggle with the creation of models to explain and predict the complex interaction of biology and the social world, particularly as they contribute to the disparate impact of illness and disease.This war on eliminating health disparities, not unlike the war in Iraq to promote democracy, has been aggressively fought to bring about change through relatively quick fixes. How wonderful it would be if all persons at-risk for heart disease, stroke, or diabetes would immediately and consistently consume healthy diets, engage in the recommended exercise regimens, adhere to their prescribed medication protocol, and reduce the stresses in their lives. However, the urgent desire to correct the ill-distributed health profile for minorities in the United States is counterbalanced by the reality that complex cultural, historical, and value-laden traditions contribute to the habits and lifestyle choices that are ultimately responsible for health and health care outcomes. The research that will lead to the needed science will combine the basic knowledge of the cell with the understanding of the social science principles that govern behavior. We will need to understand how those affected by illness behave, as well as how those who treat the afflicted respond to the situations encountered in the delivery of care.The design of our research requires a higher level of sensitivity, an interdisciplinary cooperation to capture the complex phenomena under review and, most importantly, a strong partnership with those who are the object of our study. Knowing more about the population groups at risk for health disparities is essential, but knowing them in the way that the groups know themselves continues to be a challenge. Ethnocentrism often creeps into the design and interpretation of scientific findings when differences in the cultural orientation exist between the researcher and the population under study. Whether deliberate or not, this ethnocentrism continues to be an obstacle to otherwise promising research. Similarly, an eagerness to generalize findings across different ethnic groups and, for that matter, within ethnic groups, remains a subject for careful scrutiny. Barack Obama, recently elected to the US senate from Illinois, and a man of mixed heritage, has observed that hard work and long hours are required to gain trust and understanding of the complexities, character, and needs of communities while joining with them in seeking solutions to their issues. The commitment to understanding described by Senator Obama, no doubt a major contributor to his landslide victory, is a tenet of community-based participatory research, an increasingly popular strategy used in research examining health disparities as a means of overcoming ethnocentric biases. The Kellogg Foundation Community Health Scholars Program defines community-based participatory research as a “collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings.” We propose that this stance must become normative in health disparities research if we are to understand the forces shaping everyday health behavior and personal priorities.The nursing community is well-poised to lead this revolution. As a discipline, nursing is socialized to value a holistic view of the person, particularly within the context of the social realm. Recognition and appreciation of that tradition is reflected by a US population that consistently identifies nurses as professionals whom they trust above all others. The discipline of nursing works at understanding people.Similarly important is the priority that nursing must place on increasing the numbers of minority nurse-scientists who share cultural heritage and ethnic identity with communities experiencing disproportionately high mortality rates. Their personal insight and ongoing relationships with target communities can promote access to and enrich understanding of the complex set of phenomena which contribute to the poor health status of many minority group members. They are well-poised to craft potentially promising and culturally relevant interventions. We applaud the initiatives of the National Institutes of Healths National Institute of Nursing Research and the National Center on Minority Health and Health Disparities that have endeavored to build scientific capacity within nursing. In particular, the special initiative that has funded Nursing Partnership Centers between research-intensive and minority-serving institutions has supported the development of minority nurse scientists and the conduction of relevant research that promises to aid in the elimination of health disparities. In fact, this issue of Nursing Outlook features articles by a number of scientists who have participated in Partnership Center Program.This issue of Nursing Outlook also assembles a collection of articles that reflect the evolving and specific understandings required of clinical scientists intending to develop interventions for groups likely to experience disparities in health. The articles address frameworks for understanding health disparities, methodological approaches to accessing communities who have documented disparities, and lessons learned from working with specific groups on issues of their health: •Esperat, Feng, Owens, and Green (2005) explore multiple variables and complex relationships in understanding the importance of self-empowerment as a basis of change through use of a conceptual framework, Transformation Power, with a vulnerable community in West Texas.•Sullivan-Bolyai, Bova, and Harper (2005) report on the use of qualitative description as a method of assessing, developing and refining interventions with vulnerable populations. Its application is focused on seeking and understanding clear description of phenomena through the expression and interpretation of community members and within the complex cultural context of their environments. Olshansky (2005) builds a case for community-based or participatory action research and reports on the success of several partnerships within a local context with the ultimate goal of social justice and the reduction in health disparities.•Research methods that allow researchers to understand communities more particularly and provide direction for interventions are addressed by Ruff and Alexander (2005) who report on their work using focus group methodology with African American women.•Paying attention to and respecting culturally defined practices are critical to acceptance, cooperation and collaboration in the work of research, and maintaining ongoing relationships with targeted communities is critical as well. Two articles authored by Mann, Hoke, and Williams (2005) and Adderley-Kelly and Green (2005) explore specific culturally based lessons learned from Latino and African American communities, respectively.•Finally, Berkowitz and McCubbin (2005) close the issue with their original framework for approaching health disparities research in nursing.We believe that eliminating health disparities is fundamental to our work in nursing. Sharing this belief has brought us into a professional partnership that has given rise to the Yale-Howard Scholars Program and helped to shape the NIH/NINR Partnership Initiative. We hope that this special collection issue of Nursing Outlook, devoted to research advances in the elimination of health disparities, will bring us one step closer toward our shared goal. Mission statementNursing Outlook, the official journal of the American Academy of Nursing, provides critical and timely analyses of emerging professional and health care issues of importance to all nurses. The primarily editorial goals of the Journal are to: 1Publish innovative, original articles that stimulate thoughtful discussion and scholarly debate and policy implications among nurses and other health care professionals.2Inform readers about the diversity of opinion on controversial professional and health care and health policy matters affecting nursing and the health of the public.3Provide a multidisciplinary forum for the dissemination of information derived from the synthesis of extant knowledge of current and future clinical practice and health policy alternatives.4Disseminate information about creative, alternative, and forward-looking models of education and clinical practice as they relate to changing systems of health care.5Promote the synthesis and use of scientific knowledge in a timely fashion by nurses and other health care professionals to enhance the quality and efficiency of health care.6Provide the American Academy of Nursing with a medium for communicating important policy issues and organizational activities.7Increase critical awareness of technologies, products, and services that have the potential for increasing the effectiveness of nurses in all settings. The war on the elimination of health disparities is a complex, persistent, and long-term commitment to ensure that all Americans have equitable access to the contributors of good health and experience comparable health outcomes. Considerable research, at great cost, has begun to shed light on the biomedical factors that contribute to the conditions that disproportionately affect people of color, including heart disease, stroke, HIV/AIDS, diabetes, and certain cancers. However, the morbidity and mortality rates, when tallied for these and other conditions, continue to reflect outcomes that differ by ethnicity and socioeconomic classification. Interestingly, these adverse health outcomes are inextricably linked with lifestyle choices, personal decisions, resources, and environmental factors and are influenced by culture, history, and values. Although we know a great deal about etiology and treatment of diseases, we struggle with the creation of models to explain and predict the complex interaction of biology and the social world, particularly as they contribute to the disparate impact of illness and disease. This war on eliminating health disparities, not unlike the war in Iraq to promote democracy, has been aggressively fought to bring about change through relatively quick fixes. How wonderful it would be if all persons at-risk for heart disease, stroke, or diabetes would immediately and consistently consume healthy diets, engage in the recommended exercise regimens, adhere to their prescribed medication protocol, and reduce the stresses in their lives. However, the urgent desire to correct the ill-distributed health profile for minorities in the United States is counterbalanced by the reality that complex cultural, historical, and value-laden traditions contribute to the habits and lifestyle choices that are ultimately responsible for health and health care outcomes. The research that will lead to the needed science will combine the basic knowledge of the cell with the understanding of the social science principles that govern behavior. We will need to understand how those affected by illness behave, as well as how those who treat the afflicted respond to the situations encountered in the delivery of care. The design of our research requires a higher level of sensitivity, an interdisciplinary cooperation to capture the complex phenomena under review and, most importantly, a strong partnership with those who are the object of our study. Knowing more about the population groups at risk for health disparities is essential, but knowing them in the way that the groups know themselves continues to be a challenge. Ethnocentrism often creeps into the design and interpretation of scientific findings when differences in the cultural orientation exist between the researcher and the population under study. Whether deliberate or not, this ethnocentrism continues to be an obstacle to otherwise promising research. Similarly, an eagerness to generalize findings across different ethnic groups and, for that matter, within ethnic groups, remains a subject for careful scrutiny. Barack Obama, recently elected to the US senate from Illinois, and a man of mixed heritage, has observed that hard work and long hours are required to gain trust and understanding of the complexities, character, and needs of communities while joining with them in seeking solutions to their issues. The commitment to understanding described by Senator Obama, no doubt a major contributor to his landslide victory, is a tenet of community-based participatory research, an increasingly popular strategy used in research examining health disparities as a means of overcoming ethnocentric biases. The Kellogg Foundation Community Health Scholars Program defines community-based participatory research as a “collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings.” We propose that this stance must become normative in health disparities research if we are to understand the forces shaping everyday health behavior and personal priorities. The nursing community is well-poised to lead this revolution. As a discipline, nursing is socialized to value a holistic view of the person, particularly within the context of the social realm. Recognition and appreciation of that tradition is reflected by a US population that consistently identifies nurses as professionals whom they trust above all others. The discipline of nursing works at understanding people. Similarly important is the priority that nursing must place on increasing the numbers of minority nurse-scientists who share cultural heritage and ethnic identity with communities experiencing disproportionately high mortality rates. Their personal insight and ongoing relationships with target communities can promote access to and enrich understanding of the complex set of phenomena which contribute to the poor health status of many minority group members. They are well-poised to craft potentially promising and culturally relevant interventions. We applaud the initiatives of the National Institutes of Healths National Institute of Nursing Research and the National Center on Minority Health and Health Disparities that have endeavored to build scientific capacity within nursing. In particular, the special initiative that has funded Nursing Partnership Centers between research-intensive and minority-serving institutions has supported the development of minority nurse scientists and the conduction of relevant research that promises to aid in the elimination of health disparities. In fact, this issue of Nursing Outlook features articles by a number of scientists who have participated in Partnership Center Program. This issue of Nursing Outlook also assembles a collection of articles that reflect the evolving and specific understandings required of clinical scientists intending to develop interventions for groups likely to experience disparities in health. The articles address frameworks for understanding health disparities, methodological approaches to accessing communities who have documented disparities, and lessons learned from working with specific groups on issues of their health: •Esperat, Feng, Owens, and Green (2005) explore multiple variables and complex relationships in understanding the importance of self-empowerment as a basis of change through use of a conceptual framework, Transformation Power, with a vulnerable community in West Texas.•Sullivan-Bolyai, Bova, and Harper (2005) report on the use of qualitative description as a method of assessing, developing and refining interventions with vulnerable populations. Its application is focused on seeking and understanding clear description of phenomena through the expression and interpretation of community members and within the complex cultural context of their environments. Olshansky (2005) builds a case for community-based or participatory action research and reports on the success of several partnerships within a local context with the ultimate goal of social justice and the reduction in health disparities.•Research methods that allow researchers to understand communities more particularly and provide direction for interventions are addressed by Ruff and Alexander (2005) who report on their work using focus group methodology with African American women.•Paying attention to and respecting culturally defined practices are critical to acceptance, cooperation and collaboration in the work of research, and maintaining ongoing relationships with targeted communities is critical as well. Two articles authored by Mann, Hoke, and Williams (2005) and Adderley-Kelly and Green (2005) explore specific culturally based lessons learned from Latino and African American communities, respectively.•Finally, Berkowitz and McCubbin (2005) close the issue with their original framework for approaching health disparities research in nursing. We believe that eliminating health disparities is fundamental to our work in nursing. Sharing this belief has brought us into a professional partnership that has given rise to the Yale-Howard Scholars Program and helped to shape the NIH/NINR Partnership Initiative. We hope that this special collection issue of Nursing Outlook, devoted to research advances in the elimination of health disparities, will bring us one step closer toward our shared goal. Mission statementNursing Outlook, the official journal of the American Academy of Nursing, provides critical and timely analyses of emerging professional and health care issues of importance to all nurses. The primarily editorial goals of the Journal are to: 1Publish innovative, original articles that stimulate thoughtful discussion and scholarly debate and policy implications among nurses and other health care professionals.2Inform readers about the diversity of opinion on controversial professional and health care and health policy matters affecting nursing and the health of the public.3Provide a multidisciplinary forum for the dissemination of information derived from the synthesis of extant knowledge of current and future clinical practice and health policy alternatives.4Disseminate information about creative, alternative, and forward-looking models of education and clinical practice as they relate to changing systems of health care.5Promote the synthesis and use of scientific knowledge in a timely fashion by nurses and other health care professionals to enhance the quality and efficiency of health care.6Provide the American Academy of Nursing with a medium for communicating important policy issues and organizational activities.7Increase critical awareness of technologies, products, and services that have the potential for increasing the effectiveness of nurses in all settings. Mission statementNursing Outlook, the official journal of the American Academy of Nursing, provides critical and timely analyses of emerging professional and health care issues of importance to all nurses. The primarily editorial goals of the Journal are to: 1Publish innovative, original articles that stimulate thoughtful discussion and scholarly debate and policy implications among nurses and other health care professionals.2Inform readers about the diversity of opinion on controversial professional and health care and health policy matters affecting nursing and the health of the public.3Provide a multidisciplinary forum for the dissemination of information derived from the synthesis of extant knowledge of current and future clinical practice and health policy alternatives.4Disseminate information about creative, alternative, and forward-looking models of education and clinical practice as they relate to changing systems of health care.5Promote the synthesis and use of scientific knowledge in a timely fashion by nurses and other health care professionals to enhance the quality and efficiency of health care.6Provide the American Academy of Nursing with a medium for communicating important policy issues and organizational activities.7Increase critical awareness of technologies, products, and services that have the potential for increasing the effectiveness of nurses in all settings. Mission statementNursing Outlook, the official journal of the American Academy of Nursing, provides critical and timely analyses of emerging professional and health care issues of importance to all nurses. The primarily editorial goals of the Journal are to: 1Publish innovative, original articles that stimulate thoughtful discussion and scholarly debate and policy implications among nurses and other health care professionals.2Inform readers about the diversity of opinion on controversial professional and health care and health policy matters affecting nursing and the health of the public.3Provide a multidisciplinary forum for the dissemination of information derived from the synthesis of extant knowledge of current and future clinical practice and health policy alternatives.4Disseminate information about creative, alternative, and forward-looking models of education and clinical practice as they relate to changing systems of health care.5Promote the synthesis and use of scientific knowledge in a timely fashion by nurses and other health care professionals to enhance the quality and efficiency of health care.6Provide the American Academy of Nursing with a medium for communicating important policy issues and organizational activities.7Increase critical awareness of technologies, products, and services that have the potential for increasing the effectiveness of nurses in all settings. Nursing Outlook, the official journal of the American Academy of Nursing, provides critical and timely analyses of emerging professional and health care issues of importance to all nurses. The primarily editorial goals of the Journal are to: 1Publish innovative, original articles that stimulate thoughtful discussion and scholarly debate and policy implications among nurses and other health care professionals.2Inform readers about the diversity of opinion on controversial professional and health care and health policy matters affecting nursing and the health of the public.3Provide a multidisciplinary forum for the dissemination of information derived from the synthesis of extant knowledge of current and future clinical practice and health policy alternatives.4Disseminate information about creative, alternative, and forward-looking models of education and clinical practice as they relate to changing systems of health care.5Promote the synthesis and use of scientific knowledge in a timely fashion by nurses and other health care professionals to enhance the quality and efficiency of health care.6Provide the American Academy of Nursing with a medium for communicating important policy issues and organizational activities.7Increase critical awareness of technologies, products, and services that have the potential for increasing the effectiveness of nurses in all settings.