the Framework highlights the importance of healthcare as a significant determinant of minority health and health disparity outcomes. Access to healthcare, usually defined as having health insurance coverage, an identifiable place to obtain care, and a clinician who can manage and coordinate healthcare [17] is an essential component of improving health for health disparity populations. As an increasing proportion of the population develops chronic diseases, the role that the healthcare system and clinicians have in incorporating environmental and sociocultural factors to influence health outcomes intensifies. Differences in intensity of blood pressure control, ordering and following‐up cancer screening tests, recommending and administering vaccines, and coordinating with consultants all affect health disparities. Communication and shared medical decision making between patients and clinicians are also factors relevant to health disparities. More research is needed on how race/ethnicity, SES, sexual orientation and gender identity, health literacy, limited English proficiency, and other social determinants influence patient–clinician communication and how this process may affect minority health and health disparities. At the macro‐level, local, state, and federal policies regarding availability, eligibility, and cost of healthcare can also result in disparities in access to, utilization of, and quality of care.
1.5 Inclusion of Diverse Participants in Clinical Research
The inclusion of diverse participants in clinical studies is related to minority health research but is a distinct topic. The inclusion of women, children, and minorities in clinical research was mandated by Congress in 1993.5 Although significant progress has been made in engaging women as participants in clinical research, participation from racial/ethnic minority groups remains low. Every clinical study cannot be powered to stratify outcomes by race/ethnicity, but when the data indicate a significant disparity in rates or outcomes, there is a scientific responsibility to address diversity.
One example where this was prospectively addressed is the Diabetes Prevention Trial that evaluated results by race/ethnicity [18]. The lack of diverse genotype data on minority populations in the United States has been highlighted [19], and the randomized trials evaluating efficacy of prostate cancer screening, for example, have had limited minority participation despite the fact that prostate cancer is two to three times more common among African Americans [20–22]. Future clinical research needs to ascertain greater granularity of social and demographic determinants in addition to age, gender, and race/ethnicity, such as SES, birthplace, language proficiency, sexual orientation/gender identity, and geographic residence.
Many investigators find it challenging to recruit minorities to participate in clinical studies. Successful recruitment may require different strategies, more resources, and, frequently, unfamiliar skills. Research indicates that recruitment of minorities may be more successful when active strategies (e.g., more in‐person contact, personalized messages, and active outreach) are used rather than passive strategies (e.g., mass mailings, advertisements), which are the norm for many studies [23]. Further research is needed to understand the best mechanisms to recruit and retain minority and other health disparity populations in clinical research, especially clinical trials to identify the most appropriate prevention, detection, and treatment strategies for everyone. Given that minorities constitute close to 40% of the US population, diversity of participants in clinical studies is not merely a legal mandate but critical to the conduct of ethical, equitable, and rigorous science.
1.6 Conclusions
Although significant challenges remain, increasing public interest and scientific advancements point to opportunities to better understand the causes of, and potentially eliminate, certain disparities. It is important for minority health and health disparities researchers to construct consistent/standardized terminology and extend cross‐collaborations and networks with diverse research communities using interdisciplinary approaches. The science of minority health and health disparities is a platform not only to reduce inequities but to advance knowledge in health and healthcare for all populations.
The scientists who have addressed minority health and health disparities come from a variety of disciplines. Historically, scientists conducting research on minority health and health disparities have come from epidemiology, sociology, psychology, economics, anthropology, demography, and other social sciences. Increasingly, clinician investigators, health services researchers, and translational scientists have become engaged in these topics, leveraging the power of computational techniques and advances in data collection methods. More recently, scientific advances have led to increased collaboration between social and clinical scientists and basic biomedical and data scientists. The importance of engaging communities, service providers, and policymakers is also increasingly recognized. Clearly, the broad spectrum of the field makes the task of scientific orientation daunting but necessary. The objective of this book is to create a starting point and reference for emerging and early career investigators, including graduate students, postdoctoral scholars, and junior faculty. This book is intended to lay the foundation and be a guide for scientific inquiry in minority health and health disparities research.
1.7 Key Points
Constructing consistent/standardized terminology on minority health and health disparities research.
Encouraging collaborations and networks among diverse research communities.
Promoting an interdisciplinary approach with three major focus areas: clinical and health services research, integrative biological and behavioral sciences, and community health and population health sciences.
Disclaimer
The views and opinions expressed in this chapter are those of the authors only and do not necessarily represent the views, official policy, or position of the U.S. Department of Health and Human Services or any of its affiliated institutions or agencies.
References
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