Developing a program theory of patient engagement in patient-oriented research and the impacts on the health care system: protocol for a rapid realist review

Abstract

Plain language summary: We are a team of patient partners, health care providers, a health sciences librarian, health services researchers and professionals from a provincial research support centre in Saskatoon, Canada. As a team, we are trying to understand better how involving patients, family members, caregivers and other members of the public in research may lead to improving one or more aspects of health care systems. This protocol will guide the development of a rapid realist review, to locate existing patient-oriented research studies that have been published in scientific journals or have been communicated by governmentsponsored initiatives in Canada and internationally. Realist reviews focus on interpretation, critique and deepening of understanding regarding complex processes with the development of theory. From our set of located studies, we aim to develop a theory answering the following research question: "How, why, to what extent and in what contexts does patient-oriented research produce impacts on individual collaborators, research processes, communities and health care systems?" We plan to share what we learn about patientoriented research with other community partners, stakeholders, academic researchers and health care professionals. P atient-oriented research (POR) intervenes on the traditional research role of patients, family, caregivers and other members of the general public. 1 Patientoriented research recognizes that the personal health journeys of individuals enable them to develop lived expertise regarding health care systems. This lived expertise makes patients valuable members of a research team. 1 Patient-oriented research anticipates that partnering patients with researchers will enhance research quality and will "improve health care policies and practices across the system, ultimately improving health outcomes." 2The POR discourse has been described as being in a catch-22 paradox. 3 Information from reviews and prospective studies have highlighted POR's potential to improve

A rapid realist review of patient engagement in patient-oriented research and health care system impacts: part one

“…Abstracts were screened by their title and abstract by two raters. Full-text versions of those sources were sought if both raters perceived the source met inclusion criteria [23]. The full-text of eligible sources were then appraised with Pawson's criteria of rigour and relevance under a 'fitness to purpose lens' [25][26][27][28].…”

“…In January 2019, a 12-member stakeholder team met to discuss, and prioritize, potential patient-oriented research topics to explore with a realist review [ 23 ]. Team members brought expertise in health services research, lived illness experience, patient care, patient-oriented research, policy-making, qualitative inquiry, and realist research.…”

“…While existing research has begun to illuminate the importance of social interaction within patient-oriented research teams, the lack of explicit theory regarding how patient engagement works, why, to what extent, and in what contexts continues to limit our ongoing capacity to implement successful patient-oriented research initiatives. The present study is part of a larger realist review which explored how, why, to what extent, and in what contexts does patient-oriented research produce impacts on individual collaborators, research processes, communities, and health care systems [ 23 ]. As our team worked on the data extraction, synthesis and analysis phases of our larger review, we recognized that our emerging program theory involved hypotheses regarding both the social processes that optimize collaboration on patient-oriented teams plus the impacts of patient partners’ involvement in patient-oriented research studies.…”

Understanding maternity waiting home uptake and scale-up within low-income and middle-income countries: a programme theory from a realist review and synthesis

“…An IPT is a preliminary attempt to theoretically illuminate the intervention or programme under examination. 67 69 74 As this realist review is part of a suite of three reviews aimed at better understanding the effectiveness, acceptability, feasibility and successful implementation of MWH-facility birth interventions, 4 our IPT was based on emerging themes and insights generated by a preceding review. 5 We also augmented our IPT based on the experiences of several members of the study team.…”

Developing a patient-oriented realist evaluation for COVID-19 vaccine implementation in Saskatchewan: a methodologic framework

“…We used realist evaluation, a relatively new approach in health care research, to explain why relations exist in complex systems and interventions. [9][10][11] Since theories depict the essential processes that cause behaviour and system change, theoretically based programs allow researchers to test hypotheses and show program impact and effectiveness. 12,13 In developing, testing and refining a program theory, realist evaluators establish explanatory pathways linking how certain contexts (C) evoke underlying mechanisms (M) to generate outcomes (O).…”