AMA Journal of Ethics^®

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/US Department of Veterans Affairs 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sites: University of Pennsylvania, Yale University, University of Michigan, and University of California, Los Angeles (unpublished data).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 [9-11]. 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 [12, 13]. Today many US funders, including the National Center for Advancing Translational Sciences, the Patient-Centered Outcomes Research Institute, and the Agency for Healthcare Research and Quality, require some degree of community engagement in research [14, 15].

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 [16-18]. Working with an awareness of contemporary and historical injustices, community-engaged researchers pay heightened attention to ethical research methods [19], employ practices that promote two-way knowledge exchange, and establish fair procedures for direct community benefit [20]. As Fraser and colleagues say, “collaboration is less an option than an ethical obligation” [21]. 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 [22, 23]. 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 [24, 25]. The NCSP structure provides scholars with opportunities to learn how to navigate these kinds of ethical considerations [26].

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 CSP mentorship and program site networks [27].

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 agency.

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, within 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 equitable and equal 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 disparities in health and access to health care, in order to more fully understand their perspectives. At times, this 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 [28]. 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 rather 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 [29] 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 is that 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 is that scholars have regular feedback sessions with community partners to listen and to 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 that transparency and cultivate shared understandings, including ethical implications [30] 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.