Patient Engagement in Research Resources
Patient engagement in research is an approach that involves meaningful and active collaboration in governance, priority setting, conducting research and knowledge translation. Depending on the context, patient engagement may also engage people who bring the collective voice of specific, affected communities.
While patient engagement is becoming more familiar – and required – in research projects, many researchers and patients are still unsure why this engagement is important. The process can appear daunting and many are uncertain how to begin. The “how-to” resources below provide practical and useful tools for researchers and patients who are interested in incorporating this process into current and/or upcoming research.
Practical guidelines and resources
Planning for your research project
- Centre for Health Innovation (CHI): Interactive Online Engagement Tool
In 2015, Manitoba SPOR SUPPORT Unit, through CHI created an interactive online engagement methods tool to help research teams plan appropriate activities for their patient and public engagement strategy. The tool is, and always will be, completely free and publicly available to health researchers, patients, caregivers, families, communities, health consumer organizations, policy-makers, and anyone interested in learning more about participatory approaches.
- Communicating Clearly with Patient and Caregiver Advisors [ PDF (220 KB) - external link ]
This resource is a plain language checklist to help with communications with patient partners. Developed by Health Quality Ontario for healthcare projects, the reminders on how best to communicate with patient partners is applicable to research projects.
- NIHR | INVOLVE: Resource Centre
INVOLVE, part of the National Institute for Health Research, is a UK national advisory group that brings together expertise, insight and experience in the field of public involvement in research.
- Patient and Public Engagement Planning Template [ PDF (142 KB) - external link ]
This planning template has been created by the Newfoundland and Labrador Support Unit and walks through a number of areas to consider when planning to engage patient and public members as part of research, including the Why, Who, When, What and How.
- Patient Advisors Network (PAN)
The Patient Advisors Network (PAN) is a community of people who have received health services or cared for those who have, and who are committed to improving healthcare for the benefit of all across Canada. This comprehensive resource includes listings for Canada, US, UK, AU and NZ.
- Patient-Centered Outcomes Research Institute (PCORI): Engagement Tool and Resource Repository
PCORI is a non-profit, non-governmental organization located in Washington, DC. Congress authorized the establishment of PCORI in the Patient Protection and Affordable Care Act of 2010. This searchable peer-to-peer repository includes resources that can inform future work in Patient-Centered Outcomes Research (PCOR).
- Patient Engagement in Health Research: A How-to Guide for Researchers [ PDF (1.3 MB) - external link ]
In this Guide, the Alberta SPOR SUPPORT Unit identifies five key steps to engaging patients throughout your research project: Why, Who, How, Engage, and Evaluate. The discussion of each stage includes an overview of current evidence, methods of engagement, patient and researcher competencies, tips for engagement, key examples, and engagement tools that can be used to optimize the process.
- Patient-Oriented Research Pathways Self-assessment Readiness Tool for Researchers [ PDF (493 KB) - external link ]
Patient-Oriented Research Pathways Self-assessment Readiness Tool for Patients [ PDF (459 KB) - external link ]
The POR Pathways Project, organized by the BC Support Unit, has focused on learning what competencies (defined as knowledge, skills, attitudes and attributes) are needed by individuals on POR research teams. Their 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. Self-assessment tools have been developed that guide patient partners and researchers to assess their readiness to engage in POR and to find online learning resources to acquire competencies.
- Roles for Patient Partners in Your Project [ PDF (499 KB) - external link ]
This short document is provided by the SPOR Chronic Pain Network. The document provides researchers with concrete ideas about ways patient partners can act as co-researchers on teams.
- Take Your Patient Partnering to the Next Level [ PDF (381 KB) - external link ]
This short, easy to read document by Health Quality Ontario gives concrete advice and practical tips to overcome common challenges in partnering with patients. Created for healthcare projects, this information is transferrable to research projects.
- Workbook to guide the development of a Patient Engagement in Research (PEIR) Plan [ PDF (1.03 MB) - external link ]
This workbook facilitates high-quality partnerships between researchers and patient partners undertaking research projects together by presenting guidance for research project teams to plan their activities. It uses the Patient Engagement in Research (PEIR) Framework which includes eight components that outline meaningful engagement in research from the perspectives of patient partners. Created in partnership with University of British Columbia and Arthritis Research Canada.
Budgeting and compensation
- Budgeting Tools
Created and provided by the George & Fay Yee Centre for Healthcare Innovation, this interactive website provides budgeting examples for patient engagement. A downloadable budgeting tool with considerations for all areas of costing out patient engagement is also included.
- Considerations when Paying Patient Partners in Research
This document provides a series of considerations targeting patients, researchers and research administrators interested in paying patient partners in research. This tool is part of the SPOR Patient Engagement Framework.
- New Public and Patient Engagement Budgeting Tool
The George & Fay Yee Centre for Healthcare Innovation (CHI)’s Public and Patient Engagement (PE) team developed this tool to provide guidance in budgeting for meaningful and inclusive patient and public engagement in health research.
- Patient partner compensation in research and health care: the patient perspective on why and how [ PDF (297 KB) - external link ]
This article was written by four Canadian patients about patient partner compensation considerations in research and healthcare. Richards, Dawn P.; Jordan, Isabel; Strain, Kimberly; and Press, Zal (2018). "Patient partner compensation in research and health care: the patient perspective on why and how." Patient Experience Journal: Vol. 5 : Iss. 3, Article 2. doi: 10.35680/2372-0247.1334
- NIHR | INVOLVE: Payment and Recognition for Public Involvement: Cost Calculator
This guide provides practical advice on how to budget for involving patients, carers and the public in research.
- Public and Patient Engagement Evaluation Tool (PPEET)
The PPEET tool, published by McMaster University Faculty of Health Sciences, is a series of three questionnaires to evaluate public and patient engagement. The tool was developed primarily for use within health system organizations but has also been used to evaluate engagement within other contexts (e.g. health research).
- Evaluating the Patient Partnership in Research
Patients as Partners in Research: Patient/Caregiver Surveys [ PDF (452 KB) - external link ]
Patients as Partners in Research: Researchers Surveys [ PDF (430 KB) - external link ]
These surveys were developed by patient/caregiver partners on research teams and represent areas they identified as important aspects of their experience. The surveys are meant to be administered throughout the project’s course of engagement (start, middle, and end). There are separate surveys created for researchers and for patient/caregiver partners.
- SCPOR Patient-Oriented Research Level of Engagement Tool (PORLET)
Created by the Saskatchewan SPOR SUPPORT Unit, this tool measures the degree to which a project meets the definition of patient-oriented research described by the CIHR Strategy for Patient-Oriented Research (SPOR).
Theoretical guidelines and resources
- CIHR-SPOR: Considerations when paying patient partners in research
Canada’s Strategy for Patient-Oriented Research (SPOR) encourages researchers and research partners to offer payment to patients who act as partners in research and research-related activities. The SPOR Patient Engagement Framework identifies a number of areas for engagement including involvement in priority-setting, participation in governance committees, and consultation on research design and knowledge translation activities. When patients act as partners in research and research-related activities, they are dedicating their time and expertise to the betterment of the overall project in a similar fashion to other members of the research team, albeit, with a different lens. Offering payment to patients who undertake this important work helps make participation in research more equitable and diverse by helping to remove barriers to participation in research. CIHR-SPOR SUPPORT Unit overview
- Engaging patients as partners in research: Factors associated with awareness, interest, and engagement as research partners
Kristine R Hearld, Larry R Hearld, and Allyson G Hall. SAGE Open Med. 2017; 5: 2050312116686709. Published online 2017 Jan 4. doi: 10.1177/2050312116686709
- Patient Engagement and Canada’s SPOR Initiative. A Resource Guide for Research Teams and Networks [ PDF (1.07 MB) - external link ]
Abelson J., 2015. This document has been prepared with the objective of supporting researchers, decision makers and other relevant stakeholders involved in a wide range of SPOR-related activities.
- Using qualitative Health Research methods to improve patient and public involvement and engagement in research
Researchers will need to engage patients as stakeholders in order to satisfy the overlapping mandate in health policy, care and research for engaging patients as partners in decision-making. This paper presents several suggestions to ground patient engagement approaches in established research designs and methods.
Articles, reviews, videos
- A home for patient-oriented research
“All too often, what’s important to patients differs from what health researchers want to study. Patient-oriented research requires a major shift in the way we conduct health research.”
Patrick, K., Kebbe, M., and Aubin, D.CMAJ May 22, 2018 190 (20) E607; doi: 10.1503/cmaj.180587
- Patient-Oriented Research Competencies in Health (PORCH) for patients, healthcare providers, decision- makers and researchers: protocol of a scoping review
Mallidou, A., Frisch, N., Doyle-Waters, M., MacLeod, M., Ward, J., Atherton, P. Biomed Central Systematic Reviews (2018) 7:101. doi: 10.1186/s13643-018-0762-1
- Recruiting patients as partners in health research: a qualitative descriptive study
Lidewij Eva Vat, Devonne Ryan, and Holly Etchegary. NCBI US National Library of Medicine, National Institutes of Health Research. 2017 Aug., 21 v.3 doi: 10.1186/s40900-017-0067-x
- The Power of Conversation
Breslin, M., Mayo Clinic (2013).
“Addresses the essential character of satisfying conversations between patients and providers. Conversation is not a soft skill. It is the essence of Health Care Delivery.”
- The prevalence of patient engagement in published trials: a systematic review.
What meaningful patient engagement looks like, how it benefits research and clinical practice, and what the barriers are to patient engagement. Fergusson, D., Monfaredi, Z., Pussegoda, K., Garritty, C., Lyddiatt, A., Shea, B., Duffett, L., Ghannad, M., Montroy, J., Hassan Murad, M., Pratt, M., Rader, T., Shorr R., and Yazdi, F. (2018). BioMed Central. Res Involv Engagem 4, 17 (2018). doi: 10.1186/s40900-018-0099-x
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