Top 10 Patient Engagement Resources
By Trish Roche
A few years back, we published our top 10 knowledge translation (KT) resources list, which we refer to on a regular basis — both for our own work and as a starting point for those looking to learn more about KT. We figured it was about time we did the same for patient engagement (PE). Before diving in, know that our target audience here includes primarily research team members, and so there is an emphasis on peer-reviewed literature. In addition to empirical evidence, don’t forget that one of the most valuable tools in your PE toolkit will be the people who are going to be impacted by your research themselves with lived experience of health conditions and the healthcare system. Build trusting relationships, work together to co-develop relevant and important research questions and methods and find new ways to share findings with broad and diverse audiences.
We’d like to start with a plug for PCORI’s Engagement in Health Research Literature Explorer — this is an excellent first step for those looking for published journal articles relevant to their PE topic of interest. Results can be refined by topic (including ‘detailed description of engagement’), stakeholder involvement (patients, clinicians, caregivers, and more), the phase of research engagement, and the year of publication.
Using this tool, our combined 15+ years of experience, and input from clients, researchers, and collaborators, please enjoy our list of top 10 resources for patient and public engagement in health research.
SYSTEMATIC REVIEWS
10. Patient engagement in Canada: a scoping review of the ‘how’ and ‘what’ of patient engagement in health research. (2018) Manafo, Petermann, Mason-Lai & Vandall-Walker in Health Research Policy and Systems.
For those looking for an overview of what’s being done in patient engagement (also called patient involvement, patient and public involvement, patient and public engagement, citizen engagement, patient activation, and more), this article is a great place to start. The authors look at 55 publications from Canada, the UK, and the US, and report on engagement throughout the phases of a research study, what makes a successful engagement approach, and the need for evaluation in PE.
9. Patient and public engagement in research and health system decision making: A systematic review of evaluation tools (2018) Boivin et al. in Health Expectations.
This systematic review summarizes and appraises evaluation tools for PE in both health research and health system decision-making. Of 27 tools that met the authors’ inclusion criteria, about half are specific to the research context, and consist mainly of self-administered questionnaires, with the goal of improving PE activities. The article also includes a table summarizing the different tools.
8. Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot (2019) Greenhalgh et al. in Health Expectations.
Let’s go three for three on systematic reviews — here’s one out of the UK where the authors review 65 published frameworks for supporting, evaluating and reporting patient and public engagement in research. Frameworks are grouped into five main categories (power-focused; priority-setting; study-focused; report-focused; and partnership-focused), of which brief descriptions are provided. The authors also use the Canadian Centre for Excellence on Partnerships with Patients and Public (CEPPP) evaluation tool (see #7) to grade and synthesize the frameworks, and provide an analysis of use and popularity in the field.
EVALUATION & REPORTING
7. The Canadian Centre for Excellence on Partnerships with Patients and Public (CEPPP) Patient and Public Engagement Toolkit
Not a peer-reviewed article, but rather a searchable collection of 27 evaluation tools for PE in both health research and healthcare. The toolkit provides descriptive sheets for each tool that identify the type of tool (e.g. survey, scale, checklist), the name and reference, and highlight strengths and weaknesses of each tool. Tools can be filtered and sorted by context of engagement and level of measurement (i.e. organization, project, or participant level). The tools are also assessed for (and can be sorted according to) their scientific rigor, inclusion of patient and public perspectives in their development, comprehensiveness, and usability.
6. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in health research (2017) Staniszewska et al. in Research Involvement and Engagement.
While we have this top 10 list of PE resources, there is still a need for more evidence and shared experience around the science and practice of patient engagement in health research. The Guidance for Reporting Involvement of Patients and the Public (GRIPP2) checklist was developed using the EQUATOR method for reporting guidelines (similar to PRISM or COREQ), and is actually required by certain journals when reporting on research that engages with patient and public partners (such as Research Involvement and Engagement). The GRIPP2 includes items such as methods of engagement (check out our interactive methods tool for ideas), who was involved and at what stages, as well as the impact and evaluation of engagement. All this to say, the GRIPP2 checklist — in its short or long form — is an excellent guide for any research team who plans to track and report on PE activities and outcomes.
PARTNERS VS. PARTICIPANTS
5. Sharpening the focus: differentiating between focus groups for patient engagement vs. qualitative research (2018) Doria et al. in Research Involvement and Engagement.
In this practical article, the authors use the example of focus groups and discussion groups to demonstrate the importance of coming to a shared understanding about what we mean when we talk about patient engagement methods and what it means to be a patient partner (as opposed to a patient participant). They also provide a useful flowchart for determining the contexts for requesting consent from patient partners or going through a full ethics board review.
COMPENSATION & ETHICS
4a. Patient partner compensation in research and health care: the patient perspective on why and how (2018) Richards, Jordan, Strain, and Press in Patient Experience Journal.
We couldn’t choose between these two articles, both of which address the topic of compensation in PE, so we included them both. Co-authored by patient advisors and patient partners, this article provides practical guidance on patient compensation from the view of patients, including why compensation is important (equity, respect for vulnerability, commitment, and removing barriers); how to talk about compensation; and other considerations like travel expenses, budgeting (we have a downloadable tool for that too!), and the logistical considerations of compensation.
4b. Considerations when paying patient partners in research (2019) Canadian Institutes of Health Research (CIHR).
In addition to acknowledging the patient view of compensation presented in 4a, the information provided on this site is particularly useful for those working in Canada on patient-oriented research projects. CIHR provides some guidance for both researchers and patient partners around compensation, its distinction from reimbursement, forms of payment, and provides links to existing payment practices and relevant tax information for Canadian residents. While a CIHR guidance document for ethics in PE is still in draft form, the BC SUPPORT Unit has developed a useful guide for researchers — Ensuring the Ethical Conduct of Patient-Oriented Research.
HEALTH EQUITY
3. Decolonizing both researcher and research and its effectiveness in Indigenous research (2017) Data in Research Ethics.
While you may or may not be engaging with Indigenous partners in research, the author uses their own journey of decolonization as a researcher to address major ongoing issues with Western research methodologies (i.e. whiteness, oppression, and colonization) that impact how research is done — in turn, impacting how we engage with patient and public partners. This is just a starting point and only one perspective, but for those who want to learn more about decolonization in PE and research, it’s an excellent place to start.
2. Tokenism in patient engagement (2017) Hahn et al. in Family Practice.
Through a workshop meeting in 2015 with patients, clinicians and academic researchers, the authors developed this article that provides examples of genuine and tokenistic engagement, categorized into three domains: (1) methods/structure of engagement; (2) intent; and (3) relationship building. It’s an excellent resource for practical, real-world examples of what meaningful (and tokenistic) engagement looks like.
1. Moving towards a more inclusive patient and public involvement in health research paradigm: the incorporation of a trauma-informed intersectional analysis (2017) Shimmin, Wittmeier, Lavoie, Wicklund and Sibley in BMC Health Services Research.
Full disclosure — this article was authored by team members here at the Centre for Healthcare Innovation — however, it is unique in that it applies the concept of trauma-informed practice outside of the context of healthcare, in the realm of patient and public engagement in health research. It also provides some excellent questions for research teams to reflect on when considering engaging patients and the public in their work, examining underlying questions of equity and social justice that can lead to truly meaningful, inclusive, and safe PE strategies.
BONUS: The trouble with patient and public involvement (PPI) — Keynote by Jennifer Johannesen at Cochrane Colloquium 2018:
We thought we would throw in this video, to acknowledge how current patient engagement practice may in fact be reproducing and reinforcing the status quo of health research. Hopefully, this opposing viewpoint to ‘institutionalized PE’ gives us pause, to think about why we engage, the ways in which we are engaging, and begin to address underlying processes that exist within our institutions that may actually work to negate the idealistic goals of PE (like power dynamics and social inequities).
Have other key PE resources that we should know about? Let us know in the comments or Tweet at us @KnowledgeNudge.
About the Author
Trish Roche is a Knowledge Broker with the George & Fay Yee Centre for Healthcare Innovation (CHI).
