Community Needs,Concerns, and Perceptions About Health Research: Findings From the Clinical and Translational Science Award Sentinel Network

Objectives. We used results generated from the first study of the National Institutes of Health Sentinel Network to understand health concerns and perceptions of research among underrepresented groups such as women, the elderly, racial/ethnic groups, and rural populations.Methods. Investigators at 5 Sentinel Network sites and 2 community-focused national organizations developed a common assessment tool used by community health workers to assess research perceptions, health concerns, and conditions.Results. Among 5979 individuals assessed, the top 5 health concerns were hypertension, diabetes, cancer, weight, and heart problems; hypertension was the most common self-reported condition. Levels of interest in research participation ranged from 70.1% among those in the “other” racial/ethnic category to 91.0% among African Americans. Overall, African Americans were more likely than members of other racial/ethnic groups to be interested in studies requiring blood samples (82.6%), genetic samples (76.9%), or medical records (77.2%); staying overnight in a hospital (70.5%); and use of medical equipment (75.4%).Conclusions. Top health concerns were consistent across geographic areas. African Americans reported more willingness to participate in research even if it required blood samples or genetic testing.Although more than 80 000 clinical trials are conducted each year in the United States, less than 1% of the population participates in these studies.1 Women, the elderly, members of racial/ethnic minority groups, and rural populations are often underrepresented in research,2,3 leading to findings that do not account for genetic, cultural, linguistic, racial/ethnic, gender, and age differences. A representative population sample in clinical trials is important both from an ethical perspective and to ensure external validity of findings.3–5The community health worker (CHW) intervention model could help eliminate this discrepancy. CHWs are lay community members who share a common language and culture with the people they serve.6 CHWs primarily deliver interventions, navigate patients through cancer treatment, educate patients about their diverse conditions, and facilitate connections to hidden populations. The value of the CHW in research is increasingly recognized; some states now certify CHWs to further professionalize their role.7,8 In fact, the American Journal of Public Health devoted its December 2011 issue to work associated with CHWs.7,9Recognizing this potential, the Clinical and Translational Science Award (CTSA) Strategic Goal 4 Committee (Enhancing the Health of Our Communities and the Nation) of the National Institutes of Health (NIH) established the CTSA Community Engagement Resource Development Workgroup. This group subsequently received an American Reinvestment and Recovery Act supplemental grant in 2009 to collaborate across 5 CTSA sites and 2 community-focused national organizations to develop procedures to increase community participation in research, build the capacity of CHWs to expand their role in research by increasing the rigor of health evaluation metrics in the field, and establish a sustainable network, the Sentinel Network, to provide ongoing, real-time assessments of top health and neighborhood needs, concerns, and research perceptions. The data could then be immediately shared with NIH-CTSA sites, and local communities to increase the representativeness and relevance of research by facilitating community participation.The Sentinel Network is built on an interactive community program called HealthStreet, founded by the lead author (L. B. C.) when she was at Washington University in St. Louis. HealthStreet uses CHWs for 4 aims: to assess the medical problems and health concerns of community residents, to engage in bidirectional sharing of information between the community and research investigators, to link community residents to medical and social services, and to provide community members with opportunities to participate in research.HealthStreet builds trust between the research community and the general public6,10 by directly engaging individual residents (the program’s first aim) rather than focusing on agencies, providers, and organizations as partners, as is more typical in community engagement research.6 This strategy ensures that HealthStreet’s efforts do not bypass the input of community members or inadvertently privilege the perceptions of community leaders and service providers.11–13Community members often perceive research as primarily meeting the needs of the researcher.14,15 Recognition of these and other issues has led to an increasingly robust literature on methods to engage the community in research.10,14,16,17 In line with HealthStreet’s second aim to engage in bidirectional sharing of information between communities and researchers, this literature stresses the need for community members to provide meaningful input into study content. With the discrepancy between participants enrolled in research studies and the populations to whom findings relate, efforts are needed that effectively link people to desired medical and social services (the third aim) and that use this exchange to inform individuals of opportunities for relevant research (the fourth aim).Past studies evaluating barriers to research participation indicate that members of underrepresented groups have concerns with respect to inconvenience of study times, other logistical burdens, and fears about being a guinea pig.12,18,19 That mistrust, directed at researchers and health professionals, is decreasing as a result of new community engaged research efforts.20,21 Programs such as the CTSA Sentinel Network and HealthStreet can help change these perceptions.Here we report findings generated from the Sentinel Network’s first study on the assessment of health needs and concerns at 5 diverse CTSA sites. We describe the Sentinel Network study protocol, assessment, and results from the first phase of the collaboration.     

Educating Future Physicians in Nutritional Science and Practice: The Time Is Now

The need to educate and train future physicians about nutrition and wellness has become increasingly apparent in the past decade. A rising incidence of chronic health conditions with a nutrition background (e.g., obesity, cardiovascular disease, type 2 diabetes) has led to an even greater need for nutrition educational content in medical school curricula so that physicians may counsel patients regarding their lifestyle factors. This review provides an overview of the successful development and integration of a nutrition thread in a 5-year medical school curriculum. Based on a survey conducted in our medical school program, students beginning medical school are lacking formal nutrition education, as only 8% arrived with some form of exposure. Despite this, nearly 85% of these medical students recognized that nutrition education is necessary in their training, and 70% state that the nutrition education they have received has influenced the way they care for patients.

• Key teaching points

• Physicians are faced with rising incidence of chronic health conditions that have a nutritional risk factor

• Physician self-care including optimal nutrition to support resilience is gaining importance.

• Nutrition education in medical schools is inadequate to address these rising needs.

• Implementing a comprehensive nutrition curricula that addresses personal wellness strategies, basic science concepts related to nutrition, and diagnosis and management of diseases that can be modified by or are related to nutrition as a topic thread that is woven throughout all years of the curriculum highlights the importance of nutrition in health and disease.

     

Building a Research Agenda: Responding to the Needs of Community and Migrant Health Centers

This article summarizes the results of an invitational conference designed to establish a research agenda for collaborative projects involving university-based health services researchers and staff (administrative and clinical) from Community and Migrant Health Centers (C/MHCs). More research related to C/MHCs needs to be developed, preferably by collaborative teams of researchers and C/MHC personnel. Specific research ideas are summarized, and five more detailed research proposals are presented. This is an especially important area that needs work, given the changes taking place in health care finance and the impacts of those changes on C/MHCs.     

Identifying the Core Elements of Effective Community Health Worker Programs: A Research Agenda

Community health workers (CHWs) are increasingly being incorporated into health programs because they are assumed to effectively deliver health messages in a culturally relevant manner to disenfranchised communities.Nevertheless, the role of CHWs—who they are, what they do, and how they do it—is tremendously varied. This variability presents a number of challenges for conducting research to determine the effectiveness of CHW programs, and translating research into practice.We discuss some of these challenges and provide examples from our experience working with CHWs. We call for future research to identify the “core elements” of effective CHW programs that improve the health and well-being of disenfranchised communities.THERE SEEMS TO BE A CONsensus: Community health workers (CHWs) are a good idea. They are a cost-effective way to promote health and provide some health care services to disenfranchised communities. Furthermore, because most CHWs are members of the communities within which they work, they are assumed to deliver health messages in a culturally relevant manner.1–4 Systematic literature reviews of CHW programs worldwide have provided evidence of their effectiveness for certain behaviors and disease categories, but evidence is still insufficient to justify general recommendations for policy and practice.4–8Although community educators and healers have existed worldwide for centuries, CHWs, defined as laypersons who serve as liaisons between members of their communities and health care providers and services, have played a formal role in health care since the 1940s.6,9 Over time, health program planners’ efforts to collaborate with CHWs have waxed and waned because of factors such as economic need or health care labor shortages.9,10 Yet, in the United States since the 1980s, health program planners have increasingly collaborated with CHWs to deliver various types of health promotion programs.9,11 With this increase, it has become undoubtedly clear that the role of CHWs today—who they are, what they do, and how they do it—is tremendously varied.10 This variability presents a number of challenges for conducting research to determine the effectiveness of CHW programs and to translate that research and evidence into practice.To ensure that planners integrate CHWs into programs effectively, researchers must seek clarity about the following issues: What problems arise because of the variability surrounding who CHWs are and what they do? How can we evaluate CHW programs to better document their effectiveness? And, ultimately, how can we elucidate the core elements of CHW programs so that effective programs can be adopted and implemented in other settings? We explore these issues and provide some examples from our firsthand experience as academic researchers who collaborate primarily with promotores (CHWs for Latino populations).Community health workers are described by using several different terms, including lay health advisors, patient navigators, promotores, outreach workers, peer leaders, peer educators, and community health advocates. The diversity of names reflects the different types of roles, or even opposing roles, CHWs are expected to play. For example, the word “lay” in “lay health advisors” suggests that CHWs are not “professionals,” nor have they acquired “expert” knowledge that would set them apart from an ordinary person. The term “patient navigators” implies that the CHWs are embedded within a health care system to the extent that they can help link patients to appropriate care. “Peer leaders” suggests that there is a commonality between the CHWs and their clients, and that they have some leadership characteristics that motivate community members to model or adhere to their recommendations. The term “health advocate” implies that CHWs play an activist role within their community and that their work is related to the larger struggle for social justice for disenfranchised communities. The differences in roles implied by these terms are more than simple semantics; they imply skills and training that would likely vary considerably.     

A Lifecourse Approach to Health Development: Implications for the Maternal and Child Health Research Agenda

Lifecourse-informed models of health fundamentally challenge simple biomedical models, introducing new ways of thinking about how diseases develop. This paper considers the broad implications of lifecourse theory for the maternal and child health (MCH) research agenda. The Lifecourse Health Development model provides an organizing framework for a synthesis of the existing literature on lifecourse health and identification of gaps in knowledge. Priority areas identified for MCH research in order to close these knowledge gaps include: epigenetic mechanisms and their potential mutability; peri-conception as a critical and sensitive period for environmental exposures; maternal health prior to pregnancy; the role of the placenta as an important regulator of the intra-uterine environment; and ways to strengthen early mother–child interactions. Addressing knowledge gaps will require an emphasis on longitudinal rather than cross-sectional studies, long-term (lifetime) rather than short-term perspectives, datasets that include socio-demographic, biologic and genetic data on the same subjects rather than discipline-specific studies, measurement and study of positive health as well as disease states, and study of multi-rather than single generational cohorts. Adoption of a lifecourse-informed MCH research agenda requires a shift in focus from single cause-single disease epidemiologic inquiry to one that addresses multiple causes and outcomes. Investigators need additional training in effective interdisciplinary collaboration, advanced research methodology and higher-level statistical modeling. Advancing a life course health development research agenda in MCH will be foundational to the nation’s long-term health.     

COVID‐19: The Time for Collaboration Between Long‐Term Services and Supports,Health Care Systems,and Public Health Is Now

Policy Points

• To address systemic problems amplified by COVID‐19, we need to restructure US long‐term services and supports (LTSS) as they relate to both the health care systems and public health systems. We present both near‐term and long‐term policy solutions.
• Seven near‐term policy recommendations include requiring the uniform public reporting of COVID‐19 cases in all LTSS settings; identifying and supporting unpaid caregivers; bolstering protections for the direct care workforce; increasing coordination between public health departments and LTSS agencies and providers; enhancing collaboration and communication across health, LTSS, and public health systems; further reducing barriers to telehealth in LTSS; and providing incentives to care for vulnerable populations.
• Long‐term reform should focus on comprehensive workforce development, comprehensive LTSS financing reform, and the creation of an age‐friendly public health system.

ContextThe heavy toll of COVID‐19 brings the failings of the long‐term services and supports (LTSS) system in the United States into sharp focus. Although these are not new problems, the pandemic has exacerbated and amplified their impact to a point that they are impossible to ignore. The primary blame for the high rates of COVID‐19 infections and deaths has been assigned to formal LTSS care settings, specifically nursing homes. Yet other systemic problems have been unearthed during this pandemic: the failure to coordinate the US public health system at the federal level and the effects of long‐term disinvestment and neglect of state‐ and local‐level public health programs. Together these failures have contributed to an inability to coordinate with the LTSS system and to act early to protect residents and staff in the LTSS care settings that are hotspots for infection, spread, and serious negative health outcomes.MethodsWe analyze several impacts of the COVID‐19 pandemic on the US LTSS system and policy arrangements. The economic toll on state budgets has been multifaceted, and the pandemic has had a direct impact on Medicaid, the primary funder of LTSS, which in turn has further exacerbated the states’ fiscal problems. Both the inequalities across race, ethnicity, and socioeconomic status as well as the increased burden on unpaid caregivers are clear. So too is the need to better integrate LTSS with the health, social care, and public health systems.FindingsWe propose seven near‐term actions that US policymakers could take: implementing a uniform public reporting of COVID‐19 cases in LTSS settings; identifying and supporting unpaid caregivers; bolstering support for the direct care workforce; increasing coordination between public health departments and LTSS agencies and providers; enhancing collaboration and communication across health, LTSS, and public health systems; further reducing the barriers to telehealth in LTSS; and providing incentives to care for our most vulnerable populations. Our analysis also demonstrates that our nation requires comprehensive reform to build the LTSS system we need through comprehensive workforce development, universal coverage through comprehensive financing reform, and the creation of an age‐friendly public health system.ConclusionsCOVID‐19 has exposed the many deficits of the US LTSS system and made clear the interdependence of LTSS with public health. Policymakers have an opportunity to address these failings through a substantive reform of the LTSS system and increased collaboration with public health agencies and leaders. The opportunity for reform is now.     

Patterns of Family,School, and Community Promotive Factors and Health Disparities Among Youth: Implications for Prevention Science

Prevention Science - Increasing knowledge of factors that promote health among youth from diverse backgrounds is an important step towards addressing health disparities. Although many promotive...     

Health Disparities and the Criminal Justice System: An Agenda for Further Research and Action

Although racial and ethnic minorities are more likely to be involved with the criminal justice system than whites in the USA, critical scientific gaps exist in our understanding of the relationship between the criminal justice system and the persistence of racial/ethnic health disparities. Individuals engaged with the criminal justice system are at risk for poor health outcomes. Furthermore, criminal justice involvement may have direct or indirect effects on health and health care. Racial/ethnic health disparities may be exacerbated or mitigated at several stages of the criminal justice system. Understanding and addressing the health of individuals involved in the criminal justice system is one component of a comprehensive strategy to reduce population health disparities and improve the health of our urban communities.     

Urban Health Inequities and the Added Pressure of Climate Change: An Action-Oriented Research Agenda

Climate change will likely exacerbate already existing urban social inequities and health risks, thereby exacerbating existing urban health inequities. Cities in low- and middle-income countries are particularly vulnerable. Urbanization is both a cause of and potential solution to global climate change. Most population growth in the foreseeable future will occur in urban areas primarily in developing countries. How this growth is managed has enormous implications for climate change given the increasing concentration and magnitude of economic production in urban localities, as well as the higher consumption practices of urbanites, especially the middle classes, compared to rural populations. There is still much to learn about the extent to which climate change affects urban health equity and what can be done effectively in different socio-political and socio-economic contexts to improve the health of urban dwelling humans and the environment. But it is clear that equity-oriented climate change adaptation means attention to the social conditions in which urban populations live—this is not just a climate change policy issue, it requires inter-sectoral action. Policies and programs in urban planning and design, workplace health and safety, and urban agriculture can help mitigate further climate change and adapt to existing climate change. If done well, these will also be good for urban health equity.     

A Systematic Review of Parental Influences on the Health and Well-Being of Lesbian, Gay, and Bisexual Youth: Time for a New Public Health Research and Practice Agenda

Relatively little is known about how parents influence the health and well-being of lesbian, gay, and bisexual (LGB) adolescents and young adults. This gap has led to a paucity of parent-based interventions for LGB young people. A systematic literature review on parental influences on the health of LGB youth was conducted to better understand how to develop a focused program of applied public health research. Five specific areas of health among LGB young people aged 10–24 years old were examined: (a) sexual behavior; (b) substance use; (c) violence and victimization; (d) mental health; and (e) suicide. A total of 31 quantitative articles were reviewed, the majority of which were cross-sectional and relied on convenience samples. Results indicated a trend to focus on negative, and not positive, parental influences. Other gaps included a dearth of research on sexual behavior, substance use, and violence/victimization; limited research on ethnic minority youth and on parental influences identified as important in the broader prevention science literature; and no studies reporting parent perspectives. The review highlights the need for future research on how parents can be supported to promote the health of LGB youth. Recommendations for strengthening the research base are provided.     

Using the Clinical Prevention and Population Health Curriculum Framework to encourage curricular change

The Healthy People Curriculum Task Force was established in 2002 to encourage implementation of Healthy People 2010 Objective 1.7: "To increase the proportion of schools of medicine, schools of nursing and health professional training schools whose basic curriculum for healthcare providers includes the core competencies in health promotion and disease prevention." In 2004, the Task Force published a Clinical Prevention and Population Health Curriculum Framework ("Framework") to help each profession assess and develop more robust approaches to this content in their training. During the 6 years since the publication of the Framework, the Task Force members introduced and disseminated it to constituents, facilitated its implementation at member schools, integrated it into initiatives that would influence training across schools, and adapted and applied the Framework to meet the data needs of the Healthy People 2010 Objective 1.7. The Framework has been incorporated into initiatives that help promote curricular change, such as accreditation standards and national board examination content, and efforts to disseminate the experiences of peers, expert recommendations, and activities to monitor and update curricular content. The publication of the revised Framework and the release of Healthy People 2020 (and the associated Education for Health Framework) provide an opportunity to review the efforts of the health professions groups to advance the kind of curricular change recommended in Healthy People 2010 and Healthy People 2020 and to appreciate the many strategies required to influence health professions curricula.