POR Competencies (for researchers and patients)

POR Competencies:  the POR Pathways Project

The Patient-Oriented Research (POR) Pathways Project has focused on learning what competencies (defined as knowledge, skills, attitudes and attributes) are needed by individuals on POR research teams. Our project team conducted a full scoping review of peer-reviewed and grey literature to identify competencies for each stakeholder group as defined by CIHR -- patients, researchers, health care providers and health system decision-makers. We have developed self-assessment tools that guide patient partners and researchers to assess their readiness to engage in POR and to find online learning resources to acquire competencies.  The literature revealed very few competencies for healthcare providers or decision-makers. We hope to have tools for these stakeholder groups in the future based on related work being done in Quebec.

Want to learn more about patient-oriented research?

If you and your team elect to use the tools, please let us know. We’d be pleased to hear how they are being taken up by research teams and stakeholders!  Use the webform below for easy feedback:

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Or feel free to contact us with any comments, questions or feedback at: info@bcsupportunit.ca

Resources related to this project

  1. Scoping review findings paper (Feb 2020): Frisch, N., Atherton, P., Doyle-Waters, M.M. et al. Patient-oriented research competencies in health (PORCH) for researchers, patients, healthcare providers, and decision-makers: results of a scoping review. Res Involv Engagem 6, 4 (2020). https://doi.org/10.1186/s40900-020-0180-0
  2. Scoping review protocol article (Jul 2018): Mallidou, A. A., Frisch, N., Doyle-Waters, M. M., MacLeod, M. L. P., Ward, J., & Atherton, P. (2018). Patient-Oriented Research Competencies in Health (PORCH) for patients, healthcare providers, decision-makers and researchers: protocol of a scoping review. Systematic Reviews, 7, 101. doi: https://doi.org/10.1186/s13643-018-0762-1
  3. Cochrane Colloquium Presentation abstract, Edinburgh (Sep 2018)
  4. Webinar Recording and Slide deck (Oct 2018)

Background:

Plain language summary:

Why we did this project: The Canadian Institutes of Health Research (CIHR) funded a program to change the way health research is done. The new way is called “patient-oriented research”, or by an abbreviation, “POR”. POR involves four different ‘stakeholder’ groups working together in partnership. Patients and their families/caregivers participate as equal partners on research teams. They work with researchers, people who provide care to patients, and people who make decisions about health care. Other places, like the United Kingdom, and the United States, have been doing health research this way for a number of years.

The authors work through a unit in British Columbia, Canada that was set up to help research teams and other interested people learn how to do patient-oriented research. Early on, our team members felt that we could not train people if we didn’t first understand what others had learned about which competencies (these are knowledge, skills and attitudes) were helpful to research team members working in research this way. So, we used a formal research method known as a scoping review to search the literature, that is a published record of what others have learned, to understand these things.

What we did: Our search included papers in academic journals as well as information on websites, training manuals, conference proceedings, governmental documents and statements from health organizations.  

What we learned: Writers reported the usefulness of many competencies for researchers and patients doing this work. We didn’t find many for people who provide care to patients, and people who make decisions about health care. As a team, we looked at all the competencies and grouped them into themes. 

We found that for researchers, the main competencies had to do with participation, communication and teamwork and conflict/tension management. For patients the main competencies had to do with research knowledge and skills, cultural competence/context and participation. For everyone we learned that it was helpful for team members to want to work collaboratively, as part of a group, for the public good.

Our conclusions: We worked with an advisory group made up of people representing patients and their families/caregivers, researchers, people who provide care to patients, and people who make decisions about health care to review what information we found. We concluded that our competency statements can be helpful in determining what people may need to know as they join research teams generally, and there may be more specific competencies for a research project. We recommend that our lists be used as a guide for each research team to choose the competencies that are relevant to their work. 

Non-plain language summary:

This project has been undertaken by the BC SUPPORT Unit, a Unit of the BC Academic Health Science Network funded by the Canadian Institutes of Health Research (CIHR)’s Strategy for Patient-Oriented Research (SPOR).

Patient-Oriented Research (POR) refers to a continuum of research that engages patients as partners, focuses on patient-identified priorities and improves patient outcomes. This research, conducted by multidisciplinary teams in partnership with relevant stakeholders, aims to apply the knowledge generated to improve healthcare systems and practices. POR is defined here: https://bcsupportunit.ca/about.

Objectives of SPOR1 are to foster evidence-informed health care by bringing innovative diagnostic and therapeutic approaches to the point of care, to ensure greater quality, accountability, and accessibility of care. SPOR brings together four stakeholder groups: (1) patients, (2) researchers, (3) health care providers and (4) health system decision-makers, to actively collaborate to build a sustainable, accessible and equitable health care system and bring positive changes in the health of people living in Canada.

Patient engagement in research will improve the relevance of the research and improve its translation into policy and practice, contribute to more effective health services and products, and ultimately, improve the quality of life of Canadians and result in a strengthened Canadian health care system. Guiding principles:

Inclusiveness: Patient engagement in research integrates a diversity of patient perspectives and research is reflective of their contribution– i.e., patients are bringing their lives into this.

Support: Adequate support and flexibility are provided to patient participants to ensure that they can contribute fully to discussions and decisions. This implies creating safe environments that promote honest interactions, cultural competence, training, and education. Support also implies financial compensation for their involvement (see CIHR’s Considerations when paying patient partners in research: http://cihr-irsc.gc.ca/e/51466.html).

Mutual Respect: Researchers, practitioners and patients acknowledge and value each other's expertise and experiential knowledge.

Co-Build: Patients, researchers and practitioners work together from the beginning to identify problems and gaps, set priorities for research and work together to produce and implement solutions.

CIHR-led Training Modules

Training is also available in an in-person format through the BC SUPPORT Unit’s delivery of the “Foundations in Patient-Oriented Research” workshop modules. Details: https://bcsupportunit.ca/foundations-of-por.

Pathway Development Process

The Pathway was developed by a project team through the BC SUPPORT Unit (see section below for a list of team members). The team derived the Pathway from: (a) published literature from both peer-reviewed and grey sources; and, (b) the voice of experts represented by stakeholders from all four stakeholder groups in British Columbia, Canada, and internationally (see section below for list of expert advisors). Other countries have launched similar initiatives (INVOLVE in the UK; PCORI in the US) yet there has never been a full review of the competencies (knowledge, skills and attitudes) needed by individuals to engage in this work.

The scoping review’s purpose was to summarize existing knowledge on such competencies. Our objectives were to systematically explore literature, articulate competencies necessary for POR team members, identify research gaps and provide recommendations for further research. The scoping review included peer-reviewed and grey literature. A total of 2,046 sources was retrieved through standard health databases and search methods. Data were extracted from 35 peer-reviewed papers and 38 grey literature sources. We used an iterative process to reach consensus on competency statements, which inform the Self-Assessment Readiness Tool, i.e. competencies included are based on the literature. An international group of advisors comprised of all four stakeholder groups was consulted, reviewing the findings and providing their perspectives. Our project found a dearth of information written for healthcare providers and health system decision-makers. Further research could validate these findings through a Delphi process with a panel of POR experts.

The scoping review protocol is available here:

Mallidou, A. A., Frisch, N., Doyle-Waters, M. M., MacLeod, M. L. P., Ward, J., & Atherton, P. (2018). Patient-Oriented Research Competencies in Health (PORCH) for patients, healthcare providers, decision-makers and researchers: protocol of a scoping review. Systematic Reviews, 7, 101. doi: https://doi.org/10.1186/s13643-018-0762-1

The scoping review findings paper is available here:

Frisch, N., Atherton, P., Doyle-Waters, M.M. et al. Patient-oriented research competencies in health (PORCH) for researchers, patients, healthcare providers, and decision-makers: results of a scoping review. Res Involv Engagem 6, 4 (2020). https://doi.org/10.1186/s40900-020-0180-0

Acknowledgements

We acknowledge with thanks our Project Team and Group of Advisors for their dedicated work and thoughtful input.

POR Pathways Project Team

  • Pat Atherton, Training and Capacity Development, BC SUPPORT Unit
  • Mimi Doyle-Waters, Librarian, Centre for Clinical Epidemiology & Evaluation (C2E2), University of British Columbia
  • Noreen Frisch*, Professor Emerita, School of Nursing, University of Victoria
  • Martha MacLeod, Professor and Northern Health-University of Northern British Columbia Knowledge Mobilization Research Chair, School of Nursing, University of Northern BC
  • Anastasia Mallidou, Assistant Professor, School of Nursing, University of Victoria
  • Vanessa Sheane, PhD student, School of Nursing, University of Victoria
  • John Ward, Performance Measurement and Evaluation, BC SUPPORT Unit
  • Jinelle Woodley, PhD student, School of Nursing, University of Victoria

* Project lead

POR Pathways Group of Advisors

  • Decision makers:
    • Sirisha Asuri
    • Caryl Harper
  • Healthcare Providers:
    • Agnes Black
    • Marie Westby
  • Patient Partners:
    • Kent Cadogan Loftsgard
    • Sarah Fletcher
  • Researchers:
    • Stirling Bryan
    • Caroline Sanders
  • Patient engagement, BC SUPPORT Unit: Colleen McGavin

[1] CIHR Strategy for Patient-Oriented Research - Patient Engagement Framework. http://www.cihr-irsc.gc.ca/e/48413.html