Patient-oriented research competencies in health (PORCH) for researchers, patients, healthcare providers, and decision-makers: results of a scoping review

PLAIN ENGLISH SUMMARY: Background The Canadian Institutes of Health Research funded a program, “patient-oriented research” (POR), to change the way health research is done. POR involves patients and their families/caregivers as equal partners on research teams with researchers, healthcare providers and decision-makers. The authors of this paper work through a unit in British Columbia, Canada that functions to help research teams learn how to do patient-oriented research. We felt that we could not train people if we didn’t first understand what others had learned about what competencies (knowledge, skills and attitudes) were helpful for members of these research teams. Method We used a method called a scoping review to search literature on patient-involved research. Our search included papers in academic journals as well as information on websites, training manuals, conference proceedings, governmental documents and statements from health organizations. Findings Writers reported the usefulness of many competencies for researchers and patients, with fewer competencies for healthcare providers or decision-makers. The main competencies for researchers had to do with participation, communication and conflict management; for patients they had to do with research knowledge and skills, cultural competence and participation. It was helpful that all team members want to work as part of a group for the public good. Conclusions We worked with an advisory group of people representing patients and their families/caregivers, researchers, healthcare providers and decision-makers to review our findings. We concluded that our competency statements are helpful for people to determine what they need to know or learn as they join research teams. ABSTRACT: Background The Canadian Institutes of Health Research (CIHR) launched an initiative called the Strategy for Patient-Oriented Research (SPOR) encouraging patient-oriented research (POR) that engages patients as equal partners in research teams alongside researchers, healthcare providers and health system decision-makers. Other countries have launched similar initiatives (POR-related work) yet there has never been full review of the competencies needed by individuals engaging in this work. Purpose and methods Our purpose was to summarize existing knowledge on POR and POR-related competencies by conducting a scoping review of peer-reviewed and grey literature. Our objectives were to systematically explore literature, articulate competencies necessary for research team members, identify research gaps and provide recommendations for further research. Using standard health databases and search methods, a total of 2036 sources was retrieved. Data were extracted from 35 peer-reviewed papers and 38 grey literature sources. We used an iterative process to reach consensus on competency statements. Findings and conclusions The main competencies for researchers were in categories of participation, communication and teamwork and conflict/tension management; for patients the main competencies were in research knowledge and skills, cultural competence/context and participation. While fewer competencies were documented for the other stakeholder groups, the need for understanding patient involvement in research and knowledge of the needs that research partners have are noted as competencies for healthcare providers and decision-makers. Attitudes demonstrating inclination to conduct the work were noted for all. The competencies can be used to consider learning needs of research team members and for team members wishing to assess their own readiness to serve on a POR or POR-related research team. Incidentally, we noted the lack of a common vocabulary used to describe patient-involved research, a situation making research and literature review/retrieval quite challenging. Recommendations for future research and for achieving consistency in language are addressed.