Engaging partners with lived and living experience

Road sign #2

Learn about how to engage partners with lived and living experience (PWLEs) at each step in the POR research cycle. Click on each drop-down menu item to access examples, anticipated challenges and potential solutions, and resources specific to each step. Above all: when working with PWLEs, ensure that you have enough time to meaningfully co-design and collaborate. Good luck and Bon Voyage!

First stop: Before starting the study

Click on each section title or arrow to view the content.

Step 1: Identifying a research problem

  • We recommend child health research teams engage PWLEs early and often in the research cycle. It may be helpful to form a diverse advisory council of PWLEs. At CHILD-BRIGHT, PWLEs are engaged in research projects, program committees, and other network activities from the beginning.

    Each person’s lived experience is unique and can be influenced by age, patient or caregiving role, socioeconomic and cultural backgrounds, geography, sex and gender, age, and so on. An advisory council composed of multiple PWLEs can provide different perspectives to inform the research.

    Once engaged, PWLEs and researchers can work in partnership to generate research ideas and identify a research topic and/or question(s). Existing research and lived and living experiences can be used to ensure that the research is relevant, feasible, and meaningful. 

    • Host regular meetings to get to know PWLEs & develop trust.   

    • Engage in deliberate conversations on research topics or questions using co-design activities. For example, CHILD-BRIGHT's Coaching project team performed a “needs assessment” to co-design/inform intervention. The team delivered questionnaires to families to solicit views and opinions to ensure the relevance of their proposed coaching program. You can also host in-person workshops or focus groups with PWLEs to explore research topics and questions.

    • Draw on guidebooks that encourage thoughtful planning and evaluation of PWLE engagement. Emphasize clearly expressing personal values, interests, and beliefs in relation to research topics. 

    • Ask PWLEs to review and prioritize research questions and assess accessibility. 

    • PWLEs and researchers may have differing research interests and priorities. From the outside, discuss where interests align. As researchers, consider whether you are open to conducting different research projects than what was initially envisioned.  

    • At the beginning of the research cycle, especially before grant funding is attached, there may be lack of funding for compensating PWLEs. Be transparent with the PWLEs if funds are available. PWLEs may choose to partner with researchers to apply for a grant, even if they do not have the funds to compensate initial work. Make clear the type of compensation to be received, the amount to be received, and the frequency of payment.

  • PUBLICATIONS

    GUIDEBOOKS

    • Readiness to engage workbook: This workbook provides research teams and PWLEs with relevant questions to consider when planning for and evaluating patient and public engagement. It further emphasizes articulating personal values, interests and beliefs as they relate to the research being conducted. It explores engagement in both an in-person and online context, provoking thoughts around belonging, confidentiality, and accessibility. 

    • CIHR: Ethics Guidance for Developing Partnerships with Patients and Researchers [EN/FR]. This guidance was designed to help researchers and patients develop research partnerships in the design or conduct of research.

    DOCUMENTS

 

Step 2: Co-developing a study

  • As you continue along your POR journey, PWLEs can inform which research methods you select, as well as the structure and approach to the study. Researchers can draft the study protocol, and work with PWLEs to bridge insights from lived and living experiences and research methods through discussion. Through this process, PWLEs can advise on the research design, tools to be used, selection of outcomes, data analysis, and knowledge mobilization strategies.  

    Ways to engage PWLEs: 

    • Have PWLEs participate in the peer review process 

    • Ask PWLEs to review protocols and questions for surveys or interviews 

    • Ask for PWLE input in planning the intervention(s) 

    • Ask for feedback on (or co-develop) recruitment methods  

    • Ask PWLEs to advise on a plan to engage with study participants from different age groups and diverse backgrounds  

    • Encourage PWLEs to share accessibility considerations to create an inclusive study space for participation 

  • Work together to decide which assessment processes and outcome measures would be helpful and relevant.

    PWLEs can highlight where additional explanation and context is required for research participants.

    Examples: 

    • Ask PWLEs to advise the order of measures to be administered. For example, PWLEs may suggest that general outcome measures be administered at the beginning of the study, while detailed measures, such as the Public and Patient Engagement Evaluation Tool can be administered in the second half of the study, to provide time for researchers to build rapport with participants.

    • Ask PWLEs to advise on assessment procedures such as focus group discussions. Asking the question “What information do you want to know at the end of all this?” helps to inform measure selection.

  • Researchers can collaborate with PWLEs to co-develop interventions. PWLEs provide input on feasibility, acceptability, and relevance. They can also help define the intervention’s purpose, key components, and a realistic development timeline. This can help ensure the intervention is engaging for target participants (fun and motivating for children, and relevant for parents or caregivers).

    When PWLEs are involved in the design process, they’re more likely to feel invested, which can lead to higher participation and retention rates in the intervention. Co-designing the intervention helps researchers account for diverse family values, cultural norms, and parenting styles, making the intervention more inclusive and respectful. Involving PWLEs fosters collaboration and trust between researchers and communities, empowering them as active partners in the process.

    Examples:  

    • Use co-design activities and make this accessible (whiteboards on Zoom, or Post-it notes in an in-person workshop) 

    • Engage PWLEs in identifying the purpose of the intervention, key concepts, and study timeline 

    • Ask PWLEs to advise on recruitment materials and strategies, and engage them on language review of these materials and strategies 

    • Ask PWLEs to advise on knowledge mobilization strategies, by asking questions such as: “How could we reach you and others?” 

  • Challenges can include:

    • Different priorities and opinions on how to design the study, select outcome measures and assessment procedures, and what content to include in an intervention. There should be open conversations about how the study was designed as well as how the content and outcome measures were selected.  

    • Making sure co-design activities are accessible and inclusive. Not everyone will participate in the same way. The research team should consider resources and methods that facilitate participation, such as accessibility supports.

    • Engaging people that are new to POR, as well as experienced PWLEs, in the same advisory group.

      • It’s important to understand the knowledge and experience that PWLEs already have. Those that have more experience can mentor new PWLEs. Engaging more than one PWLE (especially youth research partners) in a new activity is a good approach as they often feel more comfortable with their peers, feel comfortable asking questions, and talk with each other about the activity. peer-to-peer learning can help PWLEs feel engaged and ready to participate, whether they are new to POR or are seasoned partners.

      • Research team members can engage new PWLEs in one-on-one meetings, to further support their learning.

      • Partners may withdraw and end the partnership before the study is complete. That is OK!

      • It can take time for researchers to onboard and train new partners, as well as continue to check in with partners to sustain the partnership over time that is meaningful to everyone on the team.

    • Sharing how PWLE feedback was used, to close the loop. Explain why a suggestion cannot be integrated into the design of the study. For example, some institutions have requirements around using secure survey platforms that may not be fully accessible. It is important to be transparent with partners about why certain decisions are made and whether there can be opportunities for advocate for changes.

  • BLOG

    PUBLICATIONS

    • Reconciling validity and challenges of patient comfort and understanding: Guidelines to patient‐oriented questionnaires: This paper demonstrates how patient partners were engaged in governance, focusing on the challenges that they raised regarding the questionnaires and how these were addressed by the research team members in a six‐step approach. This six‐step approach demonstrates how research teams can integrate patient partners as equal members, develop meaningful collaboration through recognition of individual experiences and expertise and ensure that the patient perspective is taken into consideration in research and healthcare innovation. 

    TIP SHEET

    • Tips on involving patient partners in peer review of grant applications – questions to ask and things to consider based on the time point in the process (for people/organizations) [EN/FR]: The tip sheet offers helpful guidance and questions at different points in the peer review process of grant applications. There is a column for what patient partners might find helpful to ask/know about the process, and there is a column to help people and organizations consider what might be most helpful to share about their processes with patient partners. 

    WEBPAGE AND ONLINE RESOURCES

 

Second stop: During the study

Step 3: Preparing for start of study

  • Once a grant application has been accepted, child health research team can engage PWLEs in applying to the research ethics board (REB). PWLEs may be engaged to co-write the research protocol, or to make suggestions for improvements. When possible, training should be provided for new PWLEs to understand the purpose, structure, and wording of the research protocol. Since this is often a very technical document, a presentation of the content in lay language can be helpful to foster more active and meaningful discussion, and to receive relevant PWLE input.   

    Suggestions:

    • Engage PWLEs in testing any participant questionnaires to ensure that instructions are clear and easy to follow, identify mistakes, comment on the order of the questions or questionnaires, and identify potential accessibility issues 

    • Engage PWLEs in co-creating assessment tools such as interview guides in lay terms to submit to the REB 

    • Engage PWLEs in co-creating content/visuals for recruitment materials for the REB submission 

  • When possible, recruitment material should be reviewed by PWLEs to ensure it is safe, understandable, and appealing to the targeted population. PWLEs can also assist in developing user-friendly recruitment materials.

    Examples:

    • Engage youth research partners in developing videos & recruitment materials for other youth to explain to them why they should participate 

    • Ask PWLEs to share spaces and connections for recruitment 

    • This stage is highly procedural and requires a significant time investment. For this reason, it can seem daunting for PWLEs to be involved. It is important to have an open conversation on how they would like to be involved or how they prefer to have the information presented to them. Maintain regular communication, even when waiting for ethics approval. Sending a quick email to keep PWLEs updated is often appreciated.

    • This part of the research cycle is often as a period of low engagement. PWLEs report that they are not always fully engaged in this stage. Manage PWLE expectations for involvement at this time and think of new ways to engage your PWLEs, such as through: co-authoring newsletter that includes project and less formal updates, such as sharing kid & family photos, pet photos, summer vacation plans, or a school project; offering training during periods of low engagement; or asking PWLEs what they are interested in doing during lulls in the research process.

  • PUBLICATION

    TIP SHEET

Step 4: Collecting and analyzing data

  • Involving PWLEs in data collection and analysis enhances the impact and trustworthiness of findings. Their lived experience offers alternative perspectives and helps refine research tools. By adapting recruitment strategies to reflect these insights, the team can reach more participants. This approach goes beyond technique—it's about deeply understanding lived experience. PWLEs should be provided with an accessible explanation of the data to ensure an active participation in the discussion.

  • Ask PWLEs to participate in data collection through:

    • Conducting focus groups

    • Co-interviewing study participants

    • Sharing recruitment materials in their networks

    • Refining ineffective recruitment strategies

    • And more!

    • Share data with PWLEs for review. This can help increase the trustworthiness and interpretation of the data in a way that is meaningful when the findings are shared with communities. For example, in the case of qualitative data, PWLEs can help understand some of the context surrounding the data.

    • Ask PWLEs to identify themes and prioritize relevant findings for people with lived and living experience. This process can be done in a focus group, where raw findings are shared, and PWLEs can share their perspectives without researcher influence 

    • Offer training to build technical skills that can be conducted by non-academics, such as coding in qualitative analyses

  • Researchers often encounter challenges when engaging PWLEs in data analysis. PWLEs can also find this step intimidating. Addressing this may require creative ways of talking about data analysis, to improve PWLE understanding of the process. Providing context for the data collected is important. Research teams are encouraged to:

    • Provide the name of the measure, and a description of what you hope to learn from it;

    • Provide clear visuals of raw data with an explanation of what PWLEs are seeing in these visuals;

    • Remind PWLEs of your study’s hypothesis, and the aims of intervention using lay language;

    • Provide questions alongside data that could help guide PWLEs in their engagement in data analysis;

    • Prompt PWLEs for their reflections and interpretations without bias;

    • Offer different ways to engage. For example, a PWLE may prefer a one-on-one meeting to review the data with a study team member, instead of a group meeting.

  • PUBLICATIONS

 

Third stop: Wrapping up

Step 5: Communicating findings

  • PWLEs can be involved in sharing research findings in many ways. They can help develop an overall knowledge mobilization (KM) plan, create materials, disseminate findings, and co-write scientific papers. Their input helps make the material more relatable and relevant to the targeted audience. Don’t forget to ‘lose the loop by sharing the final product back with a PWLE. Describe whether and how their feedback was incorporated into the materials, and a rationale for why their feedback might not have been incorporated. 

  • Co-develop written materials depending on the project, such as guidelines, manuals, summaries, pamphlets, infographics, and policy briefs.

    • Make sure you clearly define roles. Ask PWLEs if they want to lead the development of the written materials, or if they prefer to provide feedback on a draft.

    • Invite PWLEs to take part in disseminating the study’s findings, including through podcasts, in conference presentations, webinars or digital stories.

    • When PWLEs are not available to co-present, try a creative approach, asking for a recording or written testimonial that to embed into the presentations. 

    • Permission should also be sought from PWLEs about where their stories may be shared, including at which conferences or social media platforms, and for which type of audience.  

    Invite PWLEs to co-author publications  

    • Opportunities should be provided to PWLEs for authorship. Have a clear conversation about the involvement that is required for being a co-author. PWLEs can also decide on which manuscripts that they might like to be involved with as a co-author.

    • PWLEs can also take part in writing plain language summaries of publications.

  • Timelines and outputs

    The pressure to complete research outcomes within restrictive timeframes can be high, particularly when collaborative work with PWLEs is involved. The need for flexibility in achieving milestones as a first author and potential co-authorship roles can also cause tension during the research process. Early and continuous communication is important so PWLEs and researchers have clear expectations of each other's contributions.  

    Tension in when co-authoring a paper

    Co-authoring papers with PWLEs raises ethical considerations. Reviewers often require demographic data that may conflict with the comfort levels of PWLEs, who may feel discomfort disclosing certain aspects of their identity in published work. This could potentially result in ethical dilemmas. Researchers typically do not face the same expectations for disclosing personal information as PWLEs, thus highlighting an imbalance in the publication process. Communication and clarifying expectations from the beginning is important. Determining whether PWLEs wish to have personal information disclosed should be clear from the outset.  

    Providing clear information about the different types of authorship and what each entails helps the PWLE to make informed decisions before committing to work on a manuscript:

    • Individual authorship: if a PWLE’s name appears in the co-author list, it typically comes with certain responsibilities, including reviewing drafts, and contributing to content. This may require disclosure of personal information such as their profiles, demographic information, depending on journal requirements. If PWLEs want to contribute in this way, be clear about not only the work required, but the submission requirements!  

    • Group authorship: A collective name (such as The Parent Advisory Group) can be listed as a co-author. This approach may reduce individual exposure and responsibilities, while still recognizing the group’s contributions. 

    • Inclusion in acknowledgement section: Choice is key when working with PWLEs. When in doubt, ask a PWLE for their preference, instead of making assumptions about capacity and/or interest.

  • PUBLICATIONS 

     

    INFOGRAPHICS 

    • Contributing to research papers as a CHILD-BRIGHT partner with lived and living experience [EN/FR]: Partners with lived and living experience who want to learn more about research co-authorship can consult this infographic, which breaks down the role and responsibilities associated with co-authoring a scientific article. 

     

    VIDEOS 

    • How do I publish a paper? For publication teams including patient partners [EN/FR]: This video introduces the publication process to patient and public partners who are currently or planning to become publication authors, and researchers working with patient partners becoming co-authors. It offers practical guidance for those working together on the publication and outlines steps, the roles of those involved, and potential ways patient and public partners may be involved in the process. 

     

    DOCUMENTS 

Step 6: Monitoring and evaluating the research project

  • When wrapping up a research study, be sure to record the impact of PWLE engagement. A variety of tools exist to evaluate engagement at the PWLE, project, or organizational level. There are several ways to involve PWLEs in monitoring and evaluating this impact, outlined in the examples below.

    • Encourage PWLEs in selecting evaluation tools and in writing additional questions 

    • Use existing Evaluation Frameworks to provide a foundation for best practices 

    • Use blog posts and reports to share insights and lessons learned from past evaluation experiences to enhance learning opportunities 

    • Formally end the engagement with the PWLEs on your team to receive feedback on the project from the PWLEs through form of exit interviews, off-boarding or evaluations

    • It may be challenging to maintain PWLE interest at the end of a longer project. Consider keeping them in the loop through a newsletter, by email, or a closed social media group with other members of the advisory council to keep in touch and keep them up to date in the final stages of the project  

    • Ending the research team relationship without isolating people can be difficult. Consider discussing potential next projects to partner on, or connecting PWLEs with related groups, and celebrating the end of a research engagement through a shared meal for closure.

  • PUBLICATIONS

    • Reflections on patient engagement by patient partners: how it can go wrong: This resource offers a candid reflection on the challenges of patient engagement in research and healthcare, highlighting common pitfalls through anonymized examples of “patient engagement gone wrong.” By addressing issues such as tokenism, unconscious bias, lack of support, and unrecognized vulnerability, the article encourages a critical evaluation of current practices to foster more meaningful and equitable partnerships. 

    • Lessons learned in measuring patient engagement in a Canada-wide childhood disability network: This study aimed to evaluate patient engagement in the CHILD-BRIGHT Network over a three-year period using surveys. It focused on measuring engagement, exploring perceived benefits, barriers, and facilitators, and assessing overall satisfaction from various stakeholders. The study used both longitudinal and mixed-methods approaches to gather and analyze data on patient engagement practices within the network. 

    FRAMEWORKS

    • Unité de soutien SSA Québec: A framework for evaluating patient and public engagement in research [EN/FR]: Learning Together is a framework for evaluating patient and public engagement in research. It is a national tool that can be used to plan and evaluate the engagement process before, during and at the end of a project. It is available in English and French. The Unité de soutien SSA Québec supported the creation of this tool, which was co-developed with all provincial SPOR units and other SPOR entities. 

    BLOGS AND REPORTS

    • The Evolution of Stakeholder Engagement at CHILD-BRIGHT from 2018 to 2020, Part 1 [EN/FR]: Explores how patient engagement has unfolded across our network, the extent to which researchers feel they have engaged with PWLEs (and vice versa), PWLE inclusion and voice in research.  Details how CHILD-BRIGHT is effectively implementing strategies for impactful POR. 

    • The Evolution of Stakeholder Engagement at CHILD-BRIGHT from 2018 to 2020, Part 2: Stakeholder Engagement during COVID-19 [EN/FR]: Focused on how COVID-19 impacted CHILD-BRIGHT's activities in POR. This report highlights how PWLEs, affiliates, and researchers struggled to engage, but found connection and impact through online activities. 

    • The Evolution of Stakeholder Engagement at CHILD-BRIGHT, Part 3: Scratching Beneath the Surface [EN/FR]: Discusses top facilitators of engagement with research projects, barriers to engagement within projects and the network, thoughts on impact of POR, proposed ideas to improve engagement at CHILD-BRIGHT, and recommendations for next steps to develop these initiatives. 

 

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The CHILD-BRIGHT Network is supported by the Canadian Institutes of Health Research (CIHR) under Canada’s Strategy for Patient-Oriented Research (SPOR) Initiative.

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