What is already known?

• • People with lived or living experience of health conditions or accessing healthcare services (PWLE), such as patients and their families or friends, can offer valuable insights when planning and conducting knowledge syntheses in health research.

What is new?

• • There is limited practical guidance on how to meaningfully engage PWLE in knowledge syntheses. Drawing on our team’s lived, living, and learned experiences, we provide hands-on strategies for supporting PWLE engagement across every stage of a knowledge synthesis.

Potential impact for RSM readers

• • This tutorial paper offers concrete, experience-based recommendations and tools that researchers and PWLE can use to collaborate more effectively throughout knowledge syntheses, helping to improve the relevance of synthesized evidence to PWLE’s needs and priorities.

4.1 Deciding who to engage

Researchers should think carefully about which groups, communities, or individual PWLE could bring meaningful and unique perspectives to their knowledge synthesis. Some important questions to consider are: Who cares about this research and its results? Who will be affected by the findings? Who has personal experience that could provide valuable insight? Are there voices that are often overlooked but should be included? When recruiting PWLE, the goal should be to bring in perspectives from those directly impacted by the research.Reference Richards, Poirier, Mohabir, Proulx, Robins and Smith²⁴

In our scoping review, we sought to engage PWLE who had navigated the Canadian healthcare system, either as patients or care partners. We chose to recruit PWLE from across Canada to gain a range of perspectives on the state of patient engagement in pharmacy practice research. However, this decision required PWLE to be able to meet virtually, which could have unintentionally excluded some perspectives. Prior experience partnering on pharmacy practice research was preferred, but optional, and prior knowledge synthesis experience was not a prerequisite for engagement. These criteria were chosen with intention, as it is important to create opportunities for PWLE who are new to engagement to engage.Reference Chudyk, Stoddard and Duhamel²⁷ We recruited four PWLE team members to foster peer mentorship and support, which can enhance the engagement experience.Reference Kullman, Bird and Clark²⁸

4.2 Deciding when to engage

Many PWLE value being involved early in research, during the idea generation stage, when they can help shape its direction before major decisions are made.Reference Chudyk, Stoddard and McCleary²⁰ Early collaboration also supports one of the central goals of patient engagement: to advocate for research that focuses on priorities and outcomes that matter to PWLE.⁹ When we began working with PWLE, some initial planning had already been completed, including a preliminary protocol for our scoping review of patient engagement in pharmacy practice research. Through PWLE engagement, we aimed to optimize the protocol. We also hoped the PWLE involved would remain engaged throughout the process of conducting the scoping review.

4.3 Planning for compensation and reimbursement

Recent studies highlight the importance of compensating PWLE for their time and reimbursing expenses like transportation, childcare, or respite costs.Reference Fox, Fergusson and Sadeknury²⁹ Before engaging, researchers should assess whether their existing research funding can support this compensation or dedicate specific budget lines toward it when preparing new grant applications. Planning for PWLE compensation should follow existing guidelines to ensure fairness.Reference Richards, Jordan, Strain and Press^{23, 30}

Ideally, compensation planning is done in partnership with PWLE. However, we recognize that some research teams may not yet be collaborating with PWLE at the proposal stage. In these cases, it is important to revisit the proposed compensation model with PWLE after they have been recruited onto the study team. This helps ensure that everyone agrees with and understands the compensation approach. It is also important to discuss what kinds of compensation might be best suited to the needs of PWLE on the team. Some may prefer an hourly rate, lump sum, or request a donation be made on their behalf. Others may wish to be compensated through access to equipment (e.g., being provided with a laptop) or educational opportunities. With this information in hand, researchers can develop compensation plans that meet PWLE’s needs, while also balancing the policies of the institutions where they work. Having these conversations early is key, as compensation issues take time to resolve and can potentially strain relationships between researchers and PWLE.

In our scoping review, PWLE team members were compensated at a rate of $25 CAD per hour. The compensation rate was clearly communicated from the beginning of the engagement process, and we encouraged PWLE to contact the research team if they preferred an alternative form of compensation. All PWLE on our team were comfortable with the stated compensation, and we agreed on the maximum billable hours for each research task to promote transparency and ensure project sustainability.

A challenge to compensating PWLE was that, under our department’s newly revised regulations, we were required to hire PWLE as staff members. The hiring process created an administrative burden for all team members and delayed the disbursement of compensation. Further, hiring PWLE was not common practice in our department, and we were learning to facilitate this process alongside administrative staff. We now have systems in place to streamline this process in the future.

5.1 Creating recruitment materials

To help PWLE make informed decisions about getting involved, recruitment materials should clearly describe the desired PWLE role, estimated time commitments, activities, any technological requirements (e.g., access to the internet and a webcam), available accessibility supports, and compensation and reimbursement details. Providing this information upfront helps streamline the recruitment process and attracts PWLE who are both interested and able to engage. As an example, Supplementary File 2 contains the recruitment letter we used when inviting PWLE to join our scoping review of patient engagement in pharmacy practice research.

5.2 Promoting the opportunity

Research teams should tailor their recruitment strategy to reach the specific groups they want to engage. When recruiting PWLE it is important to take deliberate steps to ensure a diversity of perspectives are represented on the research team. However, in many projects, PWLE tend to represent a narrow demographic groupReference Bombak and Hanson³¹—typically retired, educated, White, middle-class women with prior research engagement experienceReference Abelson, Canfield and Leslie³². This lack of diversity can occur because common recruitment strategies used by researchers (e.g., online advertisements shared through universities or professional networks) may be more likely to reach these individuals.Reference Michalak, Cheung and Willis³³ While all PWLE offer valuable lived experiences to a knowledge synthesis, it is important to create space for diverse groups impacted by the research topic to shape the research directions and outcomes. To reach more diverse or underrepresented groups, researchers should explore targeted advertisement methods, such as distributing physical copies of recruitment materials at local community centers and building trusting connections with community leaders who can help recruit in culturally appropriate and accessible ways.Reference Michalak, Cheung and Willis³³

5.3 Communicating with applicants

When recruiting PWLE, there may be more applicants than available positions, meaning some will not be selected. To ensure transparency, researchers should clearly explain the selection process. If possible, they should specify how many PWLE they plan to recruit and any criteria they will use to make their selection. In our research, we found it helpful to ask PWLE applicants to complete a brief introductory meeting before joining the team. This meeting helped us learn about their motivations for getting involved, the lived or living experiences they brought to the team, how they typically worked in a group setting, how they might contribute to the diversity of perspectives in the project, and whether they were available to engage in the study activities. When communicating with PWLE applicants, researchers should share details about the recruitment timeline, including the application deadline and when applicants can expect to be notified with the results, regardless of whether they were successful or not. From the PWLE perspective, not hearing back after applying to join a research project (sometimes called “getting ghosted”) can be discouraging and creates hesitation around applying to engagement opportunities in the future.

6.1 Designate an engagement liaison

One step research teams can take to promote meaningful engagement is to designate a team member who ensures that the integrity of the engagement process is upheld.Reference Agyei-Manu, Atkins and Lee¹³ This person, often called a “patient engagement liaison” (or PWLE engagement liaison), focuses on building trust and fostering positive relationships with PWLE, serving as their main point of contact for questions, comments, and concerns. Most importantly, the liaison should advocate for the voice of PWLE in the research process and facilitate communication and the co-creation of PWLE roles. In our research, two team members served as engagement liaisons. As a patient-oriented researcher, AMC oversaw all aspects of engagement in our scoping review. As a research trainee working under AMC, SK later served as the primary point of contact for PWLE during the development of the present article.

6.2 Lay the groundwork: Creating a terms of reference

To determine whether positive relationships are developing within the research team, the team must define what these relationships mean, look like, and feel like. One effective way to do this is by co-creating a Terms of Reference document, also known as “guidelines of conduct” or a “team charter.”Reference Agyei-Manu, Atkins and Lee¹³ This document typically outlines the planned workflow and the team’s needs, roles, and expectations around respectful and inclusive collaboration, constructive conflict resolution, and accessibility or accommodations.Reference Oravec, Annette and Bjorklund¹⁴ The Terms of Reference is meant to be a living document, revisited periodically as relationships evolve throughout the knowledge synthesis. Below and in Figure 2, we outline six considerations that could be discussed within a Terms of Reference Document, based on our own work with PWLE.

Figure 2

Considerations when co-creating a terms of reference.

Figure 2 Long description

Vertical infographic titled “Discussion Points for Co‑Creating a Terms of Reference.” The image presents six numbered discussion areas, each with guiding questions.

1. [1] Providing an overview of the project, including the project purpose, knowledge gap, research aims, timeline, meeting frequency, and desired outcomes.

2. [2] Deciding on terms and language, focusing on preferred terminology for roles, such as patient or caregiver partner or person with lived or living experience.

3. [3] Negotiating roles and responsibilities, including defining team members, clarifying roles across stages of the knowledge synthesis, addressing accessibility or support needs, and planning for contingencies if a team member withdraws.

4. [4] Sharing power and team dynamics, addressing core values, valuing all perspectives, collaborative decision‑making, transparency and accountability, and handling disagreements.

5. [5] Creating a communication plan, covering respectful communication, preferred methods, frequency of updates, points of contact, communication styles, addressing power imbalances, and navigating virtual meetings.

6. [6] Building relationships to support sensitive conversations, including taking time to get to know one another and defining what strong working relationships mean to the team.

6.2.4 Sharing power and team dynamics

Sharing power in a research team requires a deliberate effort to move beyond traditional academic hierarchies and to value the perspectives that all team members bring.^9, Reference Agyei-Manu, Atkins and Lee^13, Reference Chudyk, Stoddard and McCleary²⁰ In the Terms of Reference, researchers and PWLE should collaborate to clearly define how decisions will be made within the team and how PWLE will influence the knowledge synthesis at different stages of the research process. An engagement liaison can help facilitate this power-sharing by advocating for the PWLE voice and ensuring their input is heard and acted upon. Other processes for intentionally sharing power could include rotating facilitation between researchers and PWLE team members, inviting PWLE to lead agenda items, and encouraging the entire team to be vocal and identify when processes need to change.

In our work, we shared power by clearly documenting and discussing, as a group, how PWLE feedback was incorporated into the scoping review protocol and the development of the present article. To facilitate this approach and ensure PWLE input actively shaped the research, we designated a member of the academic research team as the note-taker during each meeting. As all of our meetings were conducted via videoconferencing, this person shared their screen with the entire team and took notes on PWLE feedback and updated study documents in real time. This process allowed PWLE to verify that their comments were correctly understood and see how their feedback was being incorporated. When reflecting on our team dynamics, one PWLE noted that we fostered genuine co-construction and created space for questions and dialogue between researchers and PWLE as the projects evolved.

In any discussion of power and team dynamics, it is also essential to talk about trauma-informed, intersectional approaches to engagement.Reference Shimmin, Wittmeier, Lavoie, Wicklund and Sibley³⁴ PWLE bring not only stories of resilience into research spaces but can also recount experiences of grief, pain, being silenced, or being harmed. This reality must be acknowledged throughout the engagement process. For some, sharing their lived experience can be empowering, but it may also reopen emotional wounds. Importantly, PWLE perspectives are shaped not only by personal experiences but also by their intersecting identities. Factors such as race, ethnicity, ability, gender, socioeconomic status, geography, Indigeneity, and language, among many others, influence how included they may feel. Thus, engagement strategies must be intentionally designed with these intersecting identities in mind.Reference Shimmin, Wittmeier, Lavoie, Wicklund and Sibley³⁴ In our research, we reflected on the prompts provided in the Readiness to Engage WorkbookReference Shimmin and Roche³⁵ supplied by our local CIHR SPOR SUPPORT organization to reflect on our positionality as a team before engaging with PWLE.

6.2.5 Creating a communication plan

PWLE and other research team members often have different expectations about communication methods, frequency, and what they consider respectful dialogue.Reference Agyei-Manu, Atkins and Lee¹³ The Terms of Reference should define how often study updates are shared with the group and how these updates are communicated (e.g., via email or meetings). The team should also establish standards for respectful dialogue and develop approaches to handle group conflicts that are mindful of potential power imbalances, ensuring all members feel safe to share their perspectives. Additionally, with virtual meetings becoming more common, research teams should discuss their policies on chat functions and how ideas are shared (e.g., whether team members interject or raise their hands) to make sure everyone can effectively engage. During our initial meetings with PWLE team members, we discussed their preferred communication methods and mutually agreed that email and Zoom videoconferencing were acceptable. In our first group session, we collaboratively established guidelines for respectful communication during videoconferencing.

7.1 Building capacity among PWLE

PWLE are a diverse group with experiences that go beyond just their lived and living experiences of health conditions or interactions with the healthcare system. Like the rest of the research team, they may also have different levels of experience with knowledge syntheses.Reference Agyei-Manu, Atkins and Lee¹³ Instead of assuming what everyone knows, it can be helpful to provide the same resources and training to the whole group. This ensures no one feels singled out for knowing less and gives everyone the same opportunity to build on their existing knowledge. Given that the PWLE members of our team had varying levels of experience with knowledge syntheses, our group found that workshops focused on skill development boosted confidence and competence for contributing to the knowledge synthesis. Offering educational materials in various formats, such as videos and written documents, also helped accommodate multiple learning styles.

Building capacity among youth PWLE is especially important, as they are emerging leaders in patient advocacy and may be engaging in research projects for the first time. From the perspective of the youth PWLE on our team, youth face unique pressures, such as navigating the healthcare system at a young age, balancing school or caregiving responsibilities with engagement, voicing their thoughts among adults who may speak over them, and feeling the need to represent their generation as the youngest voice at the table. To support youth PWLE effectively, it helps to involve more than one youth whenever possible, schedule dedicated check-in sessions to foster relationship-building and skill development, collaborate with a youth-friendly patient engagement liaison, avoid jargon, and ensure communication and activities are tailored to youth. Although we engaged only one youth PWLE on our research team, appointing a PhD student as the PWLE engagement liaison, who was similar in age, helped facilitate strong communication and relationship-building.

7.2 Building capacity among researchers

Education and training should not be limited to PWLE; researchers also need the skills and resources to engage PWLE meaningfully and effectively.Reference Agyei-Manu, Atkins and Lee¹³ For example, a team might seek training on how to create culturally safe, trauma-informed engagement experiences,Reference Shimmin, Wittmeier, Lavoie, Wicklund and Sibley³⁴ take a course on PWLE engagement, or read articles (like this one) on how to engage PWLE in different research settings. From the PWLE perspective, facilitating engagement is a skill that develops with practice; the more researchers engage, the more confident and effective they become. Researchers, especially those new to engagement, should remember that mistakes are part of the learning process and what matters most is being open to receiving feedback and improving over time. Within our team, SK completed a graduate-level course on patient engagement in research taught by AMC. SK then received experience-based training as the PWLE engagement liaison in preparing this article. The skills SK gained through these experiences will be carried forward to future PWLE engagement initiatives as part of an ongoing learning process.

7.3 Evaluating the impact of training

When the training resources shared with PWLE are publicly reported and evaluated, future capacity-building efforts can be improved.Reference Agyei-Manu, Atkins and Lee¹³ However, there is limited guidance on which resources are helpful for researchers and PWLE engaging on a knowledge synthesis together. The field would benefit from research teams sharing training materials and evaluations of these materials alongside academic publications or other research outputs. Although our team did not formally evaluate our capacity-building resources, we have included the materials offered to PWLE in Supplementary File 3. In addition, we provided PWLE with key articles related to our knowledge synthesis topic: patient engagement in pharmacy practice research.

8.1 Managing expectations

Researchers and PWLE may initially have different expectations about the scope of the knowledge synthesis and what it can achieve.Reference Agyei-Manu, Atkins and Lee¹³ In our own work, we faced an expectation mismatch when we received feedback from PWLE that it was unclear why our scoping review focused only on patient engagement in pharmacy practice research (defined as research about pharmacy practice or pharmacist-led care), rather than on all types of pharmacy research. To address this, we held a group discussion on the need to balance comprehensiveness with specificity in designing a knowledge synthesis research question. Through this conversation, we reached alignment on the review’s scope. Collaborating as a team to discuss and renegotiate the scope of a knowledge synthesis to balance enthusiasm with feasibility has been discussed in a previous review of patient engagement in knowledge syntheses.Reference Agyei-Manu, Atkins and Lee¹³

8.2 Creating and tracking meaningful engagement opportunities

Researchers have voiced concerns about limited opportunities for PWLE to shape knowledge syntheses.Reference Agyei-Manu, Atkins and Lee¹³ Similarly, PWLE might feel uncertain about how their input will actually influence the research.Reference Agyei-Manu, Atkins and Lee¹³ These concerns can be addressed by following the engagement plans set out in the Terms of Reference while maintaining an open dialogue with PWLE. In our work, we identified opportunities to engage PWLE in every stage of the knowledge synthesis, as described in Figure 3.

Figure 3

Opportunities to engage PWLE throughout a knowledge synthesis.

Figure 3 Long description

Vertical infographic titled “Opportunities to Engage PWLE Across Every Stage of a Knowledge Synthesis.” A winding pathway connects eight sequential stages, each describing ways to engage people with lived or living experience.

1. [1] Define the Research Question and Develop the Protocol, including collaborating with PWLE to define purpose and aims and co‑write the research protocol.

2. [2] Search for Evidence, including working with PWLE and an academic librarian to identify key search terms and demonstrating how database searches work.

3. [3] Screen and Select Studies, including co‑creating inclusion and exclusion criteria and assessing PWLE interest in consulting or participating in article screening.

4. [4] Extract Data, including co‑creating data extraction templates, assessing interest in participating in data extraction, and identifying outcomes most important to PWLE.

5. [5] Quality Assessment, including collaborating with PWLE to appraise study quality or assess how well studies address PWLE‑prioritized outcomes.

6. [6] Synthesize the Evidence, including working with PWLE to combine findings from included articles into a cohesive synthesis.

7. [7] Interpret the Findings, including interpreting review findings in the context of PWLE lived and living experiences.

8. [8] Disseminate the Results, including asking PWLE how findings should be shared, co‑creating dissemination materials such as plain‑language summaries, and inviting PWLE to share findings within their networks. A footnote defines PWLE as People With Lived/Living Experience.

In our scoping review of patient engagement in pharmacy practice research, PWLE co-defined the review’s purpose and objectives and co-developed the protocol, including the search terms and screening criteria. The PWLE on our team served in an advisory capacity during article screening and data extraction due to the volume of articles being processed. Nonetheless, we shared information about these processes, including a tutorial on using the Covidence platform (https://www.covidence.org/) for screening articles and managing data extraction. Although we have not yet completed the data analysis stage, as co-established in our terms of reference document, we plan to collaborate with PWLE on interpreting and synthesizing findings, and disseminating the review’s results.

8.3 Promoting accessibility

A key role for PWLE engaged in knowledge syntheses is providing feedback on research plans and study documents. Asking for written feedback is common in research, but some PWLE may prefer other ways of giving feedback that better suit their comfort or accessibility needs—taking into consideration digital literacy, sensory safety, cognitive load, and screen fatigue. Researchers and PWLE should decide on their preferred ways of providing feedback together.Reference Agyei-Manu, Atkins and Lee¹³ In our work, we shared both editable text files and PDFs, allowing team members to choose the format most accessible on their devices. PWLE also had the option to provide feedback directly within the documents, send an email with comments, or schedule an individual meeting with the patient engagement liaison to share their input verbally. We also found it useful to share a checklist of accommodation options with PWLE at the research outset so we could identify helpful supports together (see Supplementary File 4). PWLE emphasized the importance of ensuring all team members—including researchers—could work meaningfully together without having to mask or apologize for their needs.

8.4 Establishing timelines

8.4.1 Timelines for people with lived experience

PWLE report time-related barriers to engaging in knowledge syntheses such as projects taking longer than anticipated, unrealistic deadlines, inadequate time to prepare for meetings and provide input, and the time-consuming nature of projects leading to a loss of interest in the work.Reference Agyei-Manu, Atkins and Lee¹³ We experienced some of these barriers in our own work.

A challenge our team faced was that the timeline for our pharmacy practice scoping review extended beyond our initial expectations. Based on previous experience, we expected that descriptions of engagement, or whether it even occurred, would be missing from the vast majority of article abstracts. As a result, we screened the full texts of all identified articles, which was even more time-consuming than we initially projected. Further, after applying exclusion criteria, we included substantially more articles than we expected based on previous reviews of patient engagement in pharmacy practice research.Reference Adesanoye and Guirguis^36, Reference Cantarero-Arevalo, Kaae and Jacobsen³⁷ This delay necessitated ongoing communication to explain the situation and plan for next steps. Fortunately, the delay also allowed us to continue collaborating with PWLE and resulted in the development of the present article. Although our collaboration was extended, it provided us with a valuable opportunity to advance the practice of patient engagement in knowledge syntheses.

Practices that helped us respect PWLE’s time included establishing regular, predictable meetings during the most active phases of the knowledge synthesis, being mindful of time zone differences, using scheduling polls, and working together to set guidelines on the maximum time to be spent on various study tasks. A lesson we have learned through engagement is to ask, rather than assume, about PWLE’s preferences for meeting times and their competing responsibilities (e.g., work, volunteering, childcare, health appointments). If schedules vary, offering multiple meeting options (e.g., weekday and weekend) or recording meetings for asynchronous participation can help ensure inclusive engagement. In our project, asynchronous options were available when PWLE could not attend full group meetings.

8.4.2 Timelines for researchers

Knowledge syntheses involving PWLE may take more time from conceptualization to publication compared to those conducted solely by researchers. One time-related barrier for researchers includes having few opportunities to build rapport with PWLE and plan meaningful engagement throughout the knowledge synthesis. For some, interactions with PWLE are often confined to the busy phases of the project, which can make relationships feel rushed.Reference Agyei-Manu, Atkins and Lee¹³ Engaging PWLE in more complex tasks, such as data synthesis, can also be challenging due to the time demands of training and compiling feedback from multiple team members.Reference Agyei-Manu, Atkins and Lee¹³ In our scoping review of patient engagement in pharmacy practice research, we found it helpful to establish realistic and flexible timelines that accounted for training, relationship-building, and iterative feedback cycles. It was also helpful to appoint an engagement liaison to provide dedicated support to PWLE throughout the project. Ultimately, the additional time required to engage PWLE is an investment in conducting a review with enhanced quality, relevance, and potential for translation into practice.Reference Agyei-Manu, Atkins and Lee¹³