Introduction
National health care reform, including expanded insurance coverage under the Affordable Care Act of 2010, has focused attention on both developing effective health care systems with expanded access and improved quality and achieving health care and public health goals through cooperation among health and community-based agencies, such as social service and faith-based programs [1, 2]. For clinician leaders, such reforms create new opportunities at the intersection of evidence-based practice, quality improvement, health-services research, and community engagement [3]. Among many training opportunities for clinicians interested in these areas, one of the most influential has been the Robert Wood Johnson Foundation/Veterans Administration Clinical Scholars Program (RWJF/VA CSP) [4, 5]. This program, which has focused on health services research since its inception in 1972, incorporated an emphasis on community-engaged research in 2003 [6, 7]. Under this expanded framework, 310 physicians have been trained at four sites: University of Pennsylvania, Yale University, University of Michigan, and University of California Los Angeles (unpublished data).
After the announcement of the planned 2017 closure of the current RWJF/VA CSP, leaders at the four institutional sites developed a new program, the National Clinician Scholars Program (NCSP), which builds upon lessons learned from the CSP [8]. Unlike the CSP, the NCSP will train both physician and nursing scholars in partnership with local community-based agencies, with the support of public and private health care systems as well as academic institutions and the VA. As described below, it aims to develop leaders with expertise in research and community partnering who transform health care systems and academic medical centers, and it aims to do so via co-leadership among team members and community and health system partners. This article reviews the goals and structure of the NCSP and the opportunities for ethics training stemming from its community-engaged research focus.
Learning Ethics through Community-Engaged Research
Community-engaged research can provide the means to design, implement, and sustain interventions that fit community needs, reduce inequalities in health status and in access to health care services, enhance community capacity, and inform policy [12-14]. In community-engaged research, academic researchers like NCSP scholars and community stakeholders—patient advocates, community members, clinicians, and policymakers—are equal partners in each phase of research processes, from design and implementation to results dissemination [10, 11]. Today many US funders, including the National Center for Advancing Translational Science, the Patient-Centered Outcomes Research Institute, and the Agency for Healthcare Research and Quality, require some degree of community engagement in research.
Through prioritizing consensus-building, shared control and interpretation of data, attention to cultural humility, and nurturing inclusive and meaningful partnerships, community-engaged researchers follow the principles and practices of research integrity described in the Belmont Report while underscoring the value of community and academic co-leadership [15-17]. Working with an awareness of contemporary and historical injustices, community-engaged researchers pay heightened attention to ethical research methods [18], employ practices that promote two-way knowledge exchange, and establish fair procedures for direct community benefit [19]. As Fraser and colleagues say, “collaboration is less an option than an ethical obligation” [20]. Whereas protocols to uphold research integrity are typically approved in advance, community-engaged researchers view conducting ethical research as an iterative, evolving process; they review challenges, address conflicts, and share perspectives with community stakeholders to guide investigators’ and others’ courses of action throughout the duration of a project [21, 22]. Community-engaged researchers also recognize the need to adapt ethical guidelines to local priorities, since what might be perceived as ethical in one community might not be in another [23, 24]. The NCSP structure provides scholars with opportunities to learn how to navigate these kinds of ethical considerations [9].
Overview of the NCSP
Each current RWJF/VA CSP site, with extensive feedback from program partners and alumni, has developed a legacy program coordinated through a leadership committee. The training seeks to develop clinicians who will lead transformative change in health care delivery, public health, and community health through (1) excellence in health care delivery sciences (health services research, health policy, translational and implementation sciences, and community-based participatory research) and (2) completion of research, quality improvement and policy evaluation projects within and in partnership with health care, public health, and community systems. To provide enhanced opportunities for cross-fertilization among disciplines and sites, scholars have access to academic and community nursing leaders and their community agency networks in addition to existing RWJF/VA mentorship and program site networks [25].
Scholars at all sites are supported for two years. Their training includes graduate-level coursework in research methods, health policy, and health systems organization; seminars and experiences in leadership in health care; a focus on strategies for planning, initiating, and nurturing partnerships for community-driven interventions; and clinical or teaching service, typically at a sponsoring site, as appropriate. During the program scholars identify and undertake a mentored research project, and might have the opportunity for a one-to-two month placement with local, state, or national
Community-Engaged Research within the NCSP
Scholars’ projects utilize various models of community engagement. Some NCSP sites emphasize community-based participatory research that seeks community-defined solutions for community-prioritized issues, with academic support in program implementation and evaluation. Other sites use the model of community-partnered participatory research, which engages members of the community in adapting, implementing, or disseminating evidence-based approaches, combined with community insight, to address issues of importance to both community and academic stakeholders. To build capacity and ensure relevance, projects must (1) fit the interests of scholars and partners, including agency partners, community leaders, and other representatives of under-resourced communities and (2) support two-way knowledge exchange and co-leadership and yield value for science and the community. Projects typically aim to mitigate disparities in health and health care and might address social risk factors, such as homelessness, poverty, incarceration, and violence, which might exacerbate those disparities, under a public health framework.
For example, an NCSP site might introduce scholars to potential partners in a summer orientation and facilitate scholars’ visits to individual sites and meetings with faculty mentors and partners. Scholars with interests in community groups not represented in the main network of partners are supported in exploring new partnerships. This might be followed by a course in community partnership in health research that includes topics such as ethical principles underlying community partnership research, how to establish and nurture partnerships, how to generate ideas for projects, and how to collaboratively and respectfully conduct research within specific communities. Integral to such courses are both large-group discussions with academic and community co-leaders and smaller meetings with community and academic mentors. Scholars might also participate in projects that build community capacity to address community priorities such as reducing violence or mitigating consequences of trauma.
Ethical Principles Underlying the NCSP
Equity and equality
A primary goal of NCSP projects is motivating health justice by reducing disparities in health and health care through research and the practice of equal and equitable partnering and power sharing with systems and communities. Equity indicates the practice of fairness and impartiality; equality means that status, rights, and opportunities are similarly distributed. The program structure supports equality through co-chairing of advisory boards by academic and community leaders, co-mentorship of scholars, and co-leadership of projects. The focus on equity means that community agencies strongly represent themselves in policy advisory boards and that partners with fewer available resources are supported.
Respect
Practicing respect in community-engaged research projects means valuing all partners’ experiences, perspectives, and priorities; and interacting in culturally sensitive ways. To cultivate respect, scholars learn about historical antecedents of inequalities such as discrimination. Scholars are encouraged to spend time in partners’ neighborhoods and with community members, and to elicit partners’ views on factors underlying health inequities, in order to more fully understand their perspectives. At times, the inclusive approach can generate conflict among team members or between system and community stakeholders, since a team that is receptive to multiple viewpoints would expect to encounter disagreements [27]. Scholars receive explicit training in identifying and resolving conflicts and gain skills in using conflict effectively to advance partnerships. For example, they learn strategies for working productively with conflict by identifying similarities and differences between priorities (finding the “win-win”), accepting differences as markers of increased network diversity, and establishing shared goals for progress (e.g., agreeing to disagree).
Patient and community-centeredness
NCSP training emphasizes patient and family leadership, promoting such leadership with sensitivity to patients’ health conditions and power differentials between clinicians and patients. For example, patients with mental illnesses might not wish to be identified as mentally ill, but as patients or community members with an interest in mental health promotion. Patient and community-centeredness also means protecting the autonomy of individuals and communities to prevent exploitation and coercion. In the NCSP program at the University of California, Los Angeles, community engagement exercises are used to “level the playing field” by promoting awareness of different kinds of expertise; for example, expertise gained through lived experience [26] is recognized as equally important as scientific expertise.
Beneficence and Nonmaleficence
One meaning of beneficence, or doing good, in the context of community-engaged research means community members realize and enjoy an equitable distribution of the benefits of research. One meaning of nonmaleficence, or avoiding harm, in the context of community-engaged research means scholars have regular feedback sessions with community partners to listen and identify unexpected or known harmful effects, such as program features that could exacerbate inequalities (e.g., levels of affordability or access to services). Additionally, program activities and solutions are framed in resilience or strength-based ways to avoid the harm of labeling a community as deficient (e.g., “underserved,” “poor,” “high-risk”).
Transparency
Scholars learn to collaborate with partners in ways endorse transparency and cultivate shared understandings, including ethical implications [28], of courses of action. For example, in an exercise called “Feet of Clay,” scholars and community partners share a moment of vulnerability from their pasts. In consequence, clinician-scholars, who are often trained in formal and hierarchical environments, learn to express more fully their own perspectives as a way of establishing and maintaining common ground and relationships with partners. This kind of learning is designed to build scholars’ collaborative leadership skill.
Conclusion
The National Clinician Scholars Program is a new legacy program that builds on and enhances the successes of the RWJF/VA CSP by linking clinician-scholars to local health systems through community-engaged research. The NCSP approach offers promising strategies for training transformative, collaborative leaders. Scholars learn scientific rigor and innovation while helping build community capacity. Through rigorous research training coupled with experience partnering with community organizations, scholars gain skills needed to improve practice, execute research in the area of health justice, and motivate policy changes that more fully integrate health care with public health goals and, over the long term, hold promise to reduce disparities in health and health care. The program also provides scholars with unique ethics training: core ethics principles of equity, equality, respect, patient- and community-centeredness, beneficence, nonmaleficence, and transparency are central parts of the program’s curriculum. The ethical dimensions of scholars’ learning prepares future leaders to value equitable, respectful engagement with communities as a priority in health service delivery and research; and to ensure community voices are represented at the policymaking table.
Acknowledgements
The authors thank the Robert Wood Johnson Foundation and collaborators at each of the four National Clinician Scholars Program sites. This work was supported in part by grants from the Robert Wood Johnson Foundation (71897, 72719, 71898, 72720, 70987, 71899) and the National Institute of Environmental Health Sciences (R21ES02293). The authors would like to extend their gratitude to important CSP and NCSP partners for their long-standing support and co-leadership: Natasha Ray, MS, New Haven Healthy Start Core Services Manager, The Community Foundation for Greater New Haven; Zachary Rowe, BBA, Executive Director, Friends of Parkside; Anthony Singleton, President/Chief Executive Officer, Educators 4 Education. The authors also thank Dmitry Khodyakov, PhD, RAND Corporation, for contributions to the manuscript.
Contributor Information
Elizabeth Bromley, Assistant Professor-in-Residence in the Department of Psychiatry and Biobehavioral Sciences at UCLA David Geffen School of Medicine and a Research Psychiatrist in the Desert Pacific VA Mental Illness Research, Education and Clinical Center (MIRECC). A psychiatrist and medical anthropologist, Dr. Bromley’s work explores the moral and ethical assumptions that shape biomedical research and doctor-patient relationships. Her recent research has explored the concepts and practice of research ethics used by community participatory researchers.
Loretta Jones, The Founder and CEO of Healthy African American Families. As a “Community Gatekeeper,” Ms. Jones has dedicated her entire life towards the hope and healing of community and society-at-large. Her career as a civil rights activist, health policy advocate, and social architect has spanned more than 30 years. In an effort to level the playing field for all people, Ms. Jones continues her unyielding commitment as a change agent against disparities in human health, development, and opportunity.
Marjorie S. Rosenthal, An Associate Research Scientist in the Department of Pediatrics at the Yale University School of Medicine. She conducts research on decreasing inequities in health education and health behavior for young, vulnerable families. Specifically, she studies barriers, such as parental literacy and maternal mental health, as well as facilitating factors, such as quality improvement in physicians' offices, group well-child care, and child care providers as health educators. She also conducts research on teaching community-based participatory research.
Michele Heisler, A co-Director of the University of Michigan current RWJF Clinical Scholars Program and National Clinical Scholars Program. She conducts community-partnered research to develop and evaluate innovative primary care-based approaches to support chronic disease self-management and healthy behaviors between face-to-face clinic visits.
Julie Sochalski, Associate Professor of Nursing and Interim Associate Dean for Academic Programs at the University of Pennsylvania School of Nursing. She is recognized as a national and international expert in health policy and the health care workforce. Her 3-year tenure at the U.S. Department of Health and Human Services (2010-2013) as Director of the Division of Nursing and Principal Advisor for Health Workforce Policy at the Health Resources and Services Administration involved directing interagency initiatives that promoted research and program innovations to build a right-sized, well-skilled, and effectively-deployed health care workforce.
D. Koniak-Griffin, Associate Dean, Diversity, Equity, and Inclusion, and Professor at the UCLA School of Nursing. She served as a Principal Investigator (PI) as well as Co-Investigator and Consultant on several NIH-funded RO-1 and two P30 grants. She currently is PI on a training grant funded by NIH Fogarty International Center. She has scientific expertise, team leadership skills, and experience working with diverse populations and community partners, including school districts, health departments and community-based organizations. As Director of the Center for Vulnerable Populations Research for the past 14 years, she has served as a mentor to many pre- and postdoctoral fellows and interdisciplinary scholars interested in health disparities research and community partnerships as well as designed numerous educational programs.
Cristina Punzalan, The Administrator for the RWJF Clinical Scholars Program at UCLA. Prior to coming to UCLA in 2001, she spent seven years with the Peace Corps in various capacities including serving as a health education volunteer and trainer in Ecuador. As a research associate at UCLA, she worked with Latina women with limited resources on a healthy lifestyle intervention program.
Kenneth B. Wells, The David Weil Endowed-Chair and Professor-in-Residence in the Department of Psychiatry and Biobehavioral Sciences at UCLA David Geffen School of Medicine and of the Department of Health Policy and Management at the Fielding School of Public Health, and is also Affiliated Adjunct Staff of the RAND Corporation. Dr. Wells, a psychiatrist and health services researcher, has led a number of far-reaching investigations into how variations in health services systems and financing affect clinical care as well as on the use of Community-Partnered Participatory Research to address disparities in access to and outcomes of services for depression. Dr. Wells is the academic Principal Investigator of Community Partners in Care (CPIC) and Director of the UCLA/RAND NIMH Center for Partnered Research and is Director of the Center for Health Services and Society of the Semel Institute for Neuroscience and Health Behavior.
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