Engaged research refers to the practice of including non-professional researchers in scientific investigations – as members of the research team who share in the work of framing questions, collecting data, interpreting results, and disseminating conclusions. This approach has been used across the health, social, and natural sciences as a mechanism for bridging the gap between researchers and the people or practices they study. Well-executed engagement can improve research quality, heighten impact, enhance the public’s esteem of science, and improve the applicability of research for addressing real-world problems. More specifically, engagement practice encourages scientists to develop more acceptable research protocols, to define and value research questions of importance to the community, and to communicate findings in ways that resonate with broad and diverse audiences. As mentioned in our first post, elevated demand for this approach in clinical and health services research is relatively recent; however, scientists have applied these methods for decades. Here, we explore the landscape of engaged research, leading up to and including the newest field of patient-centered research. We also discuss the evolution of a new field dedicated to the study of engagement practice, itself.

Table 1. Landscape: types of engaged scientific research.

Approach

Overview

Action Research

A family of methodologies wherein researchers seek to simultaneously understand and act upon the issues under study, in collaboration with those affected or studied. Approaches hinge upon theories of change typically involving a cyclic process that alternates between action and critical reflection, converging toward understanding and change. (Waterman et al. Health Technol Assess 2001)

Community-Engaged Research (CEnR)

An umbrella term that includes fields such as participatory action research (PAR) and community-based participatory research (CBPR), among others. Research is conducted on community-defined topics, and it emphasizes equal partnerships among researchers and community stakeholders; co-learning and reciprocal transfer of expertise; shared decision-making power; mutual ownership of the processes and products of the research enterprise; and positive social change. (AHRQ 2004)

Citizen Science

Research collaborations between STEM scientists and non-professional volunteers, generally intended to expand opportunities for scientific data collection, provide community members with access to scientific information, and improve scientific literacy. (Cornell Citizen Science Central)

Team Science

Cross-disciplinary collaborations intended to solve complex scientific problems. This field is rooted in promoting collaboration across disciplinary silos, within academia – and has only recently expanded to include cross-stakeholder collaborations, addressing gaps in translation. (NCI Team Science Toolkit)

Patient-Centered Research (PCR) / Patient-Centered Outcomes Research (PCOR)

Research that addresses questions important to patients/stakeholders; measures outcomes that patients/stakeholders find meaningful; and engages people representing the population of interest and other relevant stakeholdersthroughout the research process, in ways that are appropriate and necessary. (PCORI model: Frank Qual Life Res 2015)

Multiple, disparate disciplines have explored the democratization of research. However, the applied models are often characterized by similar features. In this post, we focus on five traditions of engaged research – highlighting some of their contributions to the broader science of multi-stakeholder engagement in research.

 Action research is derived from the sociological, organizational, educational, and evaluation research canons spanning more than 60 years. It has contributed much to our understanding of how to approach collaborative, cross-stakeholder problem-solving in the context of real-time practice improvement. Here, the participatory process is educative and empowering, and the research process is both systematic and dynamic. These methods are receiving increased attention from the health care quality improvement and implementation science communities (cites/links).

Community-engaged research builds on the foundations of action research, but with a much stronger emphasis on equity and empowerment across research partners. There is a strong tradition of applying these methods in the context of public health, and the field has significantly advanced our understanding of ways to (1) create inclusive, equitable research environments, and (2) account for the broader ethical implications of conducting engaged research (cites/links).

Citizen science, or public participation in scientific research, is the model used across STEM field to guide involvement of non-researchers in scientific investigation. Originating with projects harnessing volunteer data collection and monitoring efforts, this field has developed key strategies for improving scientific literacy, maintaining rigor with non-professional collaborators, and managing diverse, geographically diffuse teams (cites/links).

Team science grew out of the need for collaborative groups with the capacity to address complex scientific challenges in the era of big data and multi-institutional research. Though focused more on cross-disciplinary teams among professionals than on non-professional partnerships, this field has done important work to understand the array of cultural, institutional, and financial barriers that often impede the success of complex teams (cites/links). 

Patient-centered research/patient centered outcomes research, the model currently developing in the clinical and health services research arena, has features that overlap with each of the four previously described approaches. Oriented toward the challenges of an inefficient, unresponsive research enterpriseand the complexities of health information managementthis field offers new strategies for collaborative governance, informed consent, and narrowing the research translation gap (cites/links).

Patient-centered research has been steadily building momentum in the past few years, and the number of peer-reviewed articles that document and describe engaged research activities is growing. Despite this strong indication of interest in multi-stakeholder research, the scientific community is still learning how best to refine processes and outcomes associated with this complex form of collaboration. Similar to the evolution that produced the science of team science (SciTS) field, we are witnessing the emergence of a new empirical area of inquiry – engagement science – which examines scientific, humanistic, and social science research in order to elucidate the dynamics driving successful multi-stakeholder engagement in the health research.

Key questions addressed by this emerging field include:

  • What is engagement? What does it mean to engage, and what does it mean to be engaged?
  • When is engagement in research valuable, and to what degree should it be incorporated?
  • What are the antecedents, structures, processes, and outcomes of engagement in research?
  • What are the drivers of quality and effectiveness? How can these be measured?
  • What are the ethical implications of engagement in research? How do we engage ethically?
  • How do we safeguard against potential pitfalls (maintaining scientific integrity, avoiding tokenism, etc.)?

As we work together to channel growing enthusiasm in ways that can help to legitimize the field and support its maturation, we will need to remember and acknowledge the long and varied history (across disciplines) of stakeholder engagement in research. We should build on these conceptual and methodological foundations, as we seek to understand when and how new biomedical knowledge can be produced by diverse multi-stakeholder teams. Accordingly, this series introduces and explores specific aspects of, and concepts related to, engagement in biomedical research. Each post discusses the contexts and conditions (e.g. the broader policy climate, the growing evidence base, the outstanding implementation gaps, and the recognized opportunities for strengthening the field) that frame and fuel the promising emergence of engagement science.

The Engagement Science blog series includes the following six posts. Links will be made available as each post is published:

  1. Introducing Inclusive Research Practices & Potential Impacts
  2. An Overview of the Landscape of Engaged Research
  3. Factors Fueling the Need for Better Defined Engagement
  4. A Look at Existing Evidence
  5. Where to Focus & the Future of the Field
  6. Where Do We Go from Here?
Staff

Elizabeth Cope, Ph.D., M.P.H.

Senior Director, Public and Population Health - AcademyHealth

Elizabeth Cope is Senior Director of Public and Population Health at AcademyHealth, bringing experience in the... Read Bio

Rebekah Angove, Ph.D.

Vice President, Director - Patient Advocate Foundation, REACHnet

Dr. Angove is the Vice President of Patient Experience and Program Evaluation at Patient Advocate Foundation a... Read Bio

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Rachel Dungan, M.S.S.P.

Director - AcademyHealth

Rachel Dungan works at the intersection of sectors and stakeholder groups – supporting the advancement of heal... Read Bio

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Holly Peay, PhD

Senior Researcher - RTI International

Dr. Peay is a social scientist, genetic counselor, and bioethicist at RTI International. Read Bio

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