Engaging partners with lived and living experience

Road sign #2

This roadmap shows the steps in the research cycle. By clicking on each of the stops you will be able to access examples, anticipated challenges and potential solutions, and resources specific to each stop. It’s always important to keep in mind that when working with partners with lived/living experience (PWLEs), ensure that you have enough time as meaningful co-design and collaboration means making the effort to work together - good luck on your journey and Bon Voyage!  

Phases of the Research cycle divided into 3 stops and 6 steps.

First stop: Pre-study

Step 1: Identifying a research problem

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

  • To start off, it is highly recommended that child health research teams engage PWLEs early in the research cycle. It may be helpful to form an advisory council of diverse PWLEs. At CHILD-BRIGHT, PWLEs are engaged in research projects, program committees, or other network activities from their conception.  

    As each lived and living experience can be unique (e.g., from the perspective of youth or patient, and caregivers, from diverse socioeconomic and cultural backgrounds, geography, sex and gender, age, etc.), an advisory council can provide different perspectives to inform the research. PWLEs and researchers can work in partnership to generate ideas for research and identify a research topic and/or question(s) that would be important to conduct in the field of interest. Existing research, as well as, 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 topic or questions using co-design activities. For example, CHILD-BRIGHT's Coaching project team performed a “needs assessment” to co-design/inform intervention, whereby they delivered questionnaires to families to solicit views and opinions of target population on areas of importance to ensure relevance of intervention, and/or affirm research question. Another example done by the team is to host in-person co-design workshops, in the form of focus groups with the research teams and PWLEs to explore research topics and questions.

    • Utilize 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. It would be important to have a conversation to discuss common interests, and if there is flexibility from researchers to work on different research projects than what was initially envisioned.  

    • At the beginning of the research cycle, there may be lack of funding for compensating PWLEs prior to receiving a grant. It is recommended to be transparent with the PWLEs if funds are available or not for their early engagement on an advisory council/research team. PWLEs may choose to partner with researchers to apply for a grant, even if they do not have the funds to compensate upfront. Researchers are encouraged to provide clear communication to PWLEs partnering with them on the type of compensation to be received, the amount to be received, and the frequency of compensation payments.

  • 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, which brings the living or lived experiences of patients to the research activity.  

     

    DOCUMENTS 

Step 2: Developing a grant proposal

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

    Examples:  

    • Engage PWLEs in the Peer Review process 

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

    • Get their input in planning the intervention(s) 

    • Discuss recruitment methods  

    • Ask PWLEs to advise on 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 

  • As a team, PWLEs and researchers can discuss which assessment processes and outcome measures would be most helpful and relevant. Researchers can present the options available, while PWLEs can describe the importance of selecting certain measures, as well as discuss the order of the measures. Some measures that are more general can be positioned at the beginning of the study session, while detailed measures can be administered towards the latter half of the study session which can provide time for researchers to build rapport with participants (e.g., Public and Patient Engagement Evaluation Tool or PPEET).  

    PWLEs may highlight where there may be explanation inserted as to why personal questions are being asked on some of the questionnaires (e.g., about family income, education) are necessary to the research. 

    Examples: 

    • Ask PWLEs which Patient-reported outcome Measures (PROMs) should be used: Family Empowerment Scale (FES), Parenting Stress Index (PSI) (4th ed), The Parenting Sense of Competence Scale (PSOC), Client Satisfaction Questionnaire (CSQ) (for patient satisfaction)  

    • Ask PWLEs to advise on measure selection and order of measures (e.g., PPEET questionnaire, etc.)

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

    References

    1. Abidin, R.R., PARENTING STRESS INDEX (4th ed.). 2012: Lutz, FL: PAR. 

    2. Koren PE, D.N., Friesen BJ. , Measuring empowerment in families whose children have emotional disabilities: a brief questionnaire. Rehabilitation Psychology, 1992. 37(4): p. 305. 

    3. Ohan JL, L.D., Johnston C., The Parenting Sense of Competence scale: Evidence of a stable factor structure and validity. Canadian Journal of Behavioural Science/Revue canadienne des sciences du comportement, 2000 Oct. 32(4): p. 251.  

    4. Nguyen, T. D., Attkisson, C. C., & Stegner, B. L. (1983). Assessment of patient satisfaction: Development and refinement of a service evaluation questionnaire. Evaluation and Program Planning, 6(3–4), 299–313. 

  • Researchers can collaborate with PWLEs to co-develop interventions. PWLEs provide input on feasibility, acceptability, and relevance, and help define the intervention’s purpose, key components, and a realistic development timeline. This ensures the intervention is engaging for target participants, (e.g., 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 (e.g., 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?” 

    • Based on their lived and living experiences, PWLEs may have different priorities from researchers about 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.  

    • Another challenge is around making sure that your co-designing activities are accessible and inclusive. Not everyone will participate in the same way, and therefore, the research team should look at resources and ways that facilitate participation.  

      • An example for this could be incorporating new accessibility requests. It’s good to understand what resources the PWLE already has available, such as a screen reader, and how it interacts and can be used with other technology or accommodations 

    • Another challenge that researchers may face is around engaging people that are new to, AND those familiar with POR 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 that they can ask questions, and talk with each other about the activity. This peer-to-peer learning is a good way to make them feel engaged and able to participate, whether they are new to POR or are seasoned partners.

      • Research team members can engage new PWLEs in one-on-one meetings, at their request, to further support their learning of POR and any other new initiatives that the research team is working on.

      • It is also possible that partners can withdraw and end the partnership before the study is over – which is completely 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.

    • The team should also share how the feedback from PWLEs were used to close the loop. If the researcher disagrees with some suggestions for scientific reasons or ethical reasons, it is important that the researcher explains the reasons why a suggestion cannot be integrated into the design of the study. For example, some institutions have requirements around using survey platforms that may not be accessible, but these platforms are secured. It is important to be transparent with partners to be clear about why certain decisions are made about a study, 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. 

     

    TIPSHEET 

    • 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 tipsheet 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. 

Second stop: During study

Step 3: Preparing for start of study

  • Once the grant application has been successfully accepted, another area that child health research team can engage PWLEs in the cycle is in preparation of applying to the research ethics board (or REB). PWLEs may be engaged to participate in the writing of the research project’s 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 project 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 PWLE input.   

    Examples: 

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

    • Engage PWLEs in co-creating assessment tools (e.g., interview guide) when possible, in lay terms to submit to the REB 

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

  • Recruitment material should be, when possible, reviewed by PWLEs to ensure that it these are safe, understandable, and appealing to the targeted population. PWLEs can also develop recruitment materials that will be user-friendly and appealing.  

    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 

    • A challenge here is that this stage is very 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. It is good practice to maintain regular communication, even when nothing is going on (and the team is simply waiting for ethical approval!). Sending a quick email to inform them of this is greatly appreciated & encouraged. 

    • This part of the research cycle is often regarded as a period of low engagement, and often PWLEs report that they are often not (always) fully engaged. You can inform them that this is normal for many research projects and think of new ways to engage your PWLEs during this time. Some suggestions from CHILD-BRIGHT are to: 1) set up the opportunity to co-develop and co-author a newsletter that includes project updates AND something that is of interest to PWLEs (e.g., sharing children & family, and/or pet photos, sharing summer vacation plans, a school project that their child is working on, etc.); 2) consider offering training during this time (e.g., training in research, or if other known activities are happening in other spaces or networks). Ask PWLEs what they want to do when this happens! 

  • PUBLICATION 

     

    TIPSHEET 

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 reached 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, in various ways.

    Examples: Conducting focus groups, co-interviewing study participants, sharing recruitment materials in their networks, refining ineffective recruitment strategies etc.

  • Examples:

    • Data can be shared with PWLEs for their review, which can help to 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 to 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 (e.g., coding in qualitative analyses)  

  • Researchers often express challenges with engaging PWLEs in data analysis and likewise, PWLEs can find this step intimidating. This may require more creative ways of talking about analyzing data so that PWLE have a good understanding of what they are doing. Providing context to the data collected is important, it may be a while since this partner would have been exposed to the measures or even the research hypothesis. Research teams are encouraged to:

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

    • Provide clear and easy to read 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, if a PWLE prefers a 1:1 to review the data with a study team member, this should be offered, versus a typical focus group style setting

  • PUBLICATIONS

Third stop: Wrap-up of study

Step 5: Communicating findings

  • PWLEs can be involved in the knowledge mobilization (KM) aspect of a research project by participating in the development of the study’s overall KM plan, developing materials, disseminating findings, and participating in writing scientific papers. Their input helps make the material more relatable and relevant to the targeted audience. It is important to ‘close the loop’ by sharing the final product and describing whether and how their feedback was incorporated into the materials, and a rationale for when their feedback might not have been incorporated. 

  • Co-develop written materials depending on the project (e.g., guidelines, manuals, summaries, pamphlets, infographics, policy briefs)  

    • Make sure you clearly define the role they will have in this work. Ask PWLEs if they want to lead the development of the written materials, or if they prefer to provide feedback on a draft, etc.

    Invite PWLEs to take part in disseminating the study’s findings (e.g., through participating on podcasts, in conference presentations or webinars or digital stories, etc.)  

    • When PWLEs are not available to engage with presentations, creative approaches can be provided such as offering to record or write a testimonial that can be embedded 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 in publications  

    • Opportunities should be provided to PWLEs for authorship, and there should also be a discussion 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 

    Members of the research team have highlighted the pressure to complete specific outcomes within certain timeframes, particularly when collaborative work with PWLEs is involved. Furthermore, the need for flexibility in achieving milestones as a first author and potential co-authorship roles can cause tension during the research process. Communication is very important here and early on so that everyone is on the same page and PWLEs and researchers have clear expectations of each other's contributions.  

    Tension in publication (when co-authoring a paper) 

    Co-authoring papers with PWLEs raises ethical considerations related to the disclosure of demographics. 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. As stated above, communication and clarifying expectations from the beginning is important here and determining whether PWLEs wish to have their 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. For example,  

    • Individual Authorship: if a PWLE’s name appears in the co-author list, it typically comes with certain responsibilities (e.g., reviewing drafts, contributing to content) and may require sharing 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: alternatively, a collective name (e.g., 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 PWLE's, we can't make assumptions about capacity and/or interest (CHILD-BRIGHT Coaching Research Coordinator) 

     

  • 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

  • At the final step of Road Sign #2, it is important to reflect on the impact of PWLE engagement on the research team. A variety of tools exist to evaluate engagement, at the PWLE, project, or organizational level (e.g., PPEET questionnaire mentioned above). There are several ways to involve PWLEs in monitoring and evaluating this impact, outlined in the examples below.

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

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

    • Utilize existing blogs and reports to share insights and lessons learned from past evaluation experiences to enhance learning opportunities 

    • End the engagement with the PWLEs on your team: Important to obtain 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 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  

    • It will also be important to find a way to close the research team relationship without isolating people. You can have discussions about potential next projects to partner on, ask PWLEs if you can help connect them or support them with groups to continue what they want to do. You can also have a party/meal or a way for everyone to have a community gathering 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 patient 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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