System-Based Participatory Research in Health Care: An Approach for Sustainable Translational Research and Quality Improvement

INTRODUCTION

Health care researchers and their funders, including the National Institutes of Health and the Agency for Healthcare Research and Quality, increasingly point to translational research as a means to successfully incorporate research findings into health care practice.^1,2 Translational research is defined as “the process of applying ideas, insights, and discoveries generated through basic scientific inquiry to the treatment or prevention of human disease.”³ Although the term is often applied to the bench-to-bedside adaptation of basic science into new treatments, translational research also describes the translation of promising results from clinical studies into day-to-day medical practice.¹ This “T2” translational research in health care emphasizes using research to promote action and change in real-world health care settings.¹

Even though the promise of translational research is widely recognized, this nascent field’s conceptual framework and methods are still developing.¹ A traditional investigator-driven approach to research that fails to adequately engage patients, clinicians, and other key stakeholders within health care systems is a known barrier to translating research into practice,⁴ often leading to interventions that are not sustainable in real-world environments.

Community-based participatory research (CBPR) is a conceptually rich alternative to traditional research paradigms that emphasizes partnership with community members in all phases of research activity. Our work in the Community Engagement Program of the University of California, San Francisco (UCSF) Clinical and Translational Science Institute (CTSI) has convinced us that the conceptual model and methods of CBPR can be fruitfully applied to translational research, including research partnerships with health delivery organizations. Participatory models for translational research should engage patients, individual clinicians and staff, and operational and administrative leaders of health systems in the research planning, implementation, and evaluation process.

COMMUNITY-BASED PARTICIPATORY RESEARCH

CBPR emphasizes equitable partnerships and promotes the sharing of power, knowledge, and resources between investigators and research participants in all stages of research and application.^5,6 This approach can be an important and successful strategy for public health improvement.^7–9

CBPR is built on the principle that when users of research are brought in from the very beginning of the research-planning process, studies lead to stronger findings that are more practical and relevant to community needs.¹⁰ The community includes those directly affected by a given health issue and working toward a common goal.^10,11 For translational research in health systems, we propose the community be defined to include health system leadership, as well as patients and clinic staff.

Practice-based research networks (PBRNs), in which community-based clinicians are actively engaged in research and quality improvement, are driven by the principles of participatory research^12,13 and have led to many successful collaborations to improve patient care.^13–16 Whereas PBRNs provide an important paradigm for engaging clinicians in research,¹³ quality improvement often involves changes at the system level (such as widespread deployment of health information technology) that are typically influenced more by health care delivery system leadership than by individual clinicians.

We recognize broader health care delivery systems outside of PBRNs, such as community clinic consortia, local public health departments, and integrated delivery systems, as communities for research engagement analogous to patient groups and physician practices (Figure 1⇓). These communities have leaders—chief administrators, medical directors—as well as frontline staff who will use and be affected by study findings. Reframing the principles of translational research in this context can provide useful insights into how to implement and sustain improvements in health care.

• Download figure
• Open in new tab
• Download powerpoint

Figure 1.

Engaging communities in system-based participatory research.

Note: Systems-based participatory research engages in research partnerships at the level of the health delivery system, including the clinicians and patients nested within a delivery system, as well as delivery system leaders and other stakeholders in the organization. Practice-based research networks traditionally focus on research engagement with individual clinicians and practices, some of which may be part of an organized delivery system, but others are not. Similarly, community-based participatory research initially developed as a form of research engagement directly with patients, community members, and community-based organizations, which may or may not be part of an organized clinical delivery system.

CHALLENGES

Applying participatory research principles to translational research is challenging. Although investigators, delivery system leaders, and clinicians all strive to improve health care quality, they often operate under differing timelines, contexts, and reward systems.⁴ For example, systems are interested in rapid quality improvement, but traditional research funding may arrive so late that an organization’s goals or strategies may have changed. The Agency for Health care Research and Quality’s use of rapid cycle funding mechanisms, as well as impending changes to the review process at the National Institutes of Health, may help address this issue.²⁰ As with CBPR, it will take time and effort for researchers, funders, and the community of health care system leaders to bridge these differences.

Incorporating participatory research principles into T2 translational research is essential if this research is to fully succeed in improving clinical care. Engaging health care systems as a form of community partner increases the likelihood that research questions will be relevant, interventions sustainable, and research findings translated into systematic action.