Consider how a welcoming, safe, and collaborative environment will be developed. The principles from the SPOR Patient Engagement Framework can be applied:  

• Inclusiveness: Consider ways for how to include diverse perspectives and how the perspectives of patient partners are incorporated into the research.  

• Co-build: Involve patient partners early on and throughout the stages of the project, including with priority setting and study design, participant recruitment, data collection, and dissemination.  

• Support: It is important to consider the supports that can be provided to patient partners, including offering flexibility for different ways to be involved, different forms of compensation, and opportunities to be trained in research.  

• Mutual respect: Recognize the value of different forms of knowledge, including experiential knowledge, that each team member and patient partner holds.  

CHILD-BRIGHT is deeply committed to the goals of Equity, Diversity, Inclusion, Decolonization and Indigenization (EDI-DI). This commitment includes, but is not limited to, shifting the culture of the CHILD-BRIGHT Network to align with an EDI-DI framework and actively engaging in reflective practices throughout our engagement, research, and knowledge mobilization. We strive to do this by centering the voices of historically excluded people and their lived and living experiences in our work, and by ensuring authentic inclusion of people with disabilities to make sure the connections created are meaningful and sustainable.  Read more about our EDI-DI framework, aims and definitions, on the CHILD-BRIGHT website.

During the onboarding process of welcoming PWLEs to a team, consider having a contact person who they can connect with and go to when they have questions. Build in time during the first team meeting & initial subsequent meetings for PWLEs and researchers to get to know each other. Getting to know each other also involves establishing trust and rapport. To begin with addressing power differentials, it may be helpful to include some questions and conversations about topics beyond research, education, and credentials. For example, what are some hobbies, interests, and fun activities that team members and PWLEs like to do? Ice breakers can be especially helpful to build rapport with engaging with youth research partners.  

It is also an important time to review the research process and how it works; how the project is funded, and it’s association with a larger organization, institute or network (when applicable); the role of the PWLE and expectations in working with the research team, as identified in the Terms of Reference (details in the next section); and key concepts relating to ethics and data confidentiality. PWLEs who are new to research may require some additional training, which can be identified and supported at this stage.  

The Terms of Reference (TOR) is a guiding working document that can be revisited throughout the partnership. This document can be developed in collaboration with PWLEs (5). You may want to include the following information in the TOR:  

• How would partners like to be involved? What are the roles, expectations, and goals that patient partners might have?  

• The Involvement Matrix can be a helpful tool to have conversations about the roles and activities that PWLEs might want to be involved with (6).  

• The Strengths, Skills, and Goals Matrix can be used as a tool to discuss with partners about their current strengths and skills, and what goals they might like to work on during the project (5).  

• Consider discussing how decisions might be made and how disagreements might be addressed. How is feedback from patient partners incorporated? If not, what might be the reasoning.  

• Offer different accessible and flexible ways that PWLEs could be involved. For example, are there opportunities for patient partners to engaged asynchronously if they have other commitments. 

• Outline how PWLEs might prefer to receive compensation. Some patient partners may prefer monetary forms of compensation, while others may prefer acknowledgements as a co-author or co-presenting at conferences. Youth research partners may prefer a combination of compensations, such as monetary and/or opportunities for team building activities. The CHILD-BRIGHT Network offers compensation guidelines, and different ways for how PWLEs can be compensated has been published (7). Guidelines are available for how to start the conversation about compensation with PWLEs (8).  

Examples of a TOR document have also been published in the literature (9).  

Build in time to have reflections, which can be through regular individual check-in meetings with PWLEs and as a team. Activities can be used to guide the reflections, such as the Start, Stop, and Continue activity (10).   

• What should we stop doing? E.g., what is not working well for the team?  

• What should we start doing? E.g., what are some new ideas or how should we address new situations?  

• What should we continue doing? E.g., what is working well for the team or what strategies do we like?   

The READYorNot™ Brain-Based Disabilities Project shares their reflections about their journey over a 5-year project (11).  

It is important to incorporate evaluation processes to assess what is working well in the partnership and areas that could be improved. These evaluations can also be helpful for other POR teams to learn from. There are different tools that teams can used based on their needs:  

• Public and Patient Engagement Evaluation Tool (PPEET): This tool includes a series of three questionnaires: 1. Organization Questionnaire to assess the capacity and supports of an organization for POR; 2. Participant Questionnaire to assess the perspectives of patient partners in the activity that they were engaged in; and 3. Project Questionnaire to assess the completion of an activity. Surveys can be selected to be completed based on the project needs. The surveys have been administered to a wide range of patient partners, including youth and young adults (11,12).  

• Learning Together Evaluation framework for Patient and Public Engagement: This framework highlights the guiding principles for POR: Relationship Building, Co-building, Equity, diversity and inclusion, Support and barrier removal, Transparency, Sustainability, and Transformation.  

Other measurement tools can be reviewed through the Patient and Public Engagement Evaluation Toolkit, which offers a comprehensive description of available tools that have been used in health care and health research. Each tool has also been assessed for its comprehensiveness, patient and public perspective, comprehensiveness, and usability.

Conducting patient-oriented research in pediatric populations: A narrative review. 

Cooper, A. P., Nguyen, L., Irelewuyi, O., & Miller, S. P. (2024). Children, 11(10), 1266. DOI: 10.3390/children11101266 

This paper introduces POR in child health with general information about the steps for how researchers and patient partners can learn how to engage in research partnerships.  

Exploring the “how” in research partnerships with young partners by experience: lessons learned in six projects from Canada, the Netherlands, and the United Kingdom. 

Nguyen, L., van Oort, B., Davis, H., van der Meulen, E., Dawe-McCord, C., Franklin, A., ... & Ketelaar, M. (2022). Research involvement and engagement, 8(1), 62. DOI: 10.1186/s40900-022-00400-7 

This paper explores the lessons learned from six POR projects in child health in three countries, with a list of key recommendations for other teams looking to embark on this journey. 

1. Canadian Institutes of Health Research. Strategy for Patient Oriented Research. Patient engagement framework. 2014.  

2. Seddon K, Elliott J, Johnson M, White C, Watson M, Nelson A, et al. Using the United Kingdom standards for public involvement to evaluate the impact of public involvement in a multinational clinical study. Res Involv Engagem. 2021;7(1):22.  

3. UK Public Involvement Standards Development Partnership. UK Standards for Public Involvement in Research. [cited 2023 July 10]. UK Standards for Public Involvement. Available from: https://sites.google.com/nihr.ac.uk/pi-standards/home 

4. Sheridan S, Schrandt S, Forsythe L, Hilliard TS, Paez KA, Advisory Panel on Patient Engagement (2013 inaugural panel). The PCORI engagement rubric: Promising practices for partnering in research. Ann Fam Med. 2017;15(2):165–70.  

5. Allemang B, Patton M, Greer K, Pintson K, Farias M, Schofield K, et al. Development of the Strengths, Skills, and Goals Matrix: a tool for facilitating strengths-based adolescent and young adult engagement in research. Res Involv Engagem. 2023;9(1):89.  

6. Smits DW, van Meeteren K, Klem M, Alsem M, Ketelaar M. Designing a tool to support patient and public involvement in research projects: the Involvement Matrix. Res Involv Engagem. 2020;6:30.  

7. Novak-Pavlic M, Gorter JW, Phoenix MP, Micsinszki SK, Pozniak K, Li L, et al. Patients and families as partners in patient-oriented research: How should they be compensated? J Patient-Centered Res Rev. 2023;10(2):82–90.  

8. Richards DP, Jordan I, Strain K, Press Z. Patients as partners in research: How to talk about compensation with patient partners. J Orthop Sports Phys Ther. 2020;50(8):413–4.  

9. Munce SEP, John T, Luong D, Mooney S, Stromquist L, Chambers K, et al. Establishing effective patient engagement through a Terms of Reference to foster inclusivity and empowerment in research: Example from a healthcare transition quality indicators project. Health Expect. 2024;27(6):e70113.  

10. Hoon A, Oliver E, Szpakowska K, Newton P. Use of the ‘Stop, Start, Continue’ method is associated with the production of constructive qualitative feedback by students in higher education. Assess Eval High Educ. 2015;40(5):755–67.  

11. Nguyen L, Pozniak K, Strohm S, Havens J, Dawe-McCord C, Thomson D, et al. Navigating meaningful engagement: Lessons from partnering with youth and families in brain-based disability research. Res Involv Engagem. 2024;10(1):17.  

12. Abelson J, Li K, Wilson G, Shields K, Schneider C, Boesveld S. Supporting quality public and patient engagement in health system organizations: development and usability testing of the Public and Patient Engagement Evaluation Tool. Health Expect. 2016;19(4):817–27.  

13. Abelson J, Tripp L, Kandasamy S, Burrows K, PPEET Implementation Study Team. Supporting the evaluation of public and patient engagement in health system organizations: Results from an implementation research study. Health Expect Int J Public Particip Health Care Health Policy. 2019 Oct;22(5):1132–43.   

• Strategy for Patient-Oriented Research (SPOR): Patient Engagement Framework [EN / FR]: SPOR Patient Engagement Framework is designed to establish key concepts, principles and areas for patient engagement to be adopted by all SPOR partners. This framework primarily explores patient engagement in decision-making, capacity building for patient engagement, and highlights tools, resources and evaluation strategies. 

• InGauge: Youth Engagement in Research Framework: A framework to engage youth in research, created in collaboration with youth members. 

• CHILD-BRIGHT Network Interview with Scientific Director: SPOR Patient Engagement Framework is designed to establish key concepts, principles and areas for patient engagement to be adopted by all SPOR partners. This framework primarily explores patient engagement in decision-making, capacity building for patient engagement, and highlights tools, resources and evaluation strategies. 

• BC SUPPORT Unit: Patient Oriented Research 101: A Video Introduction: This video highlights why POR exists, its importance in health research, how partners can be engaged in research, and how to meaningfully integrate POR into research. 

• CHILD-BRIGHT Tips for Researchers Working with Patient-Partners [EN/FR]: Key steps for researchers working with PWLEs. Explore how to engage early and articulate your project, clarify motives and expectations, finding ways to connect and sustain engagement. 

• CHILD-BRIGHT: CEE YOU! Project: Tip Sheet for Ethical Engagement [EN/FR]: How researchers can ethically engage youth with neurodevelopmental disabilities in different stages of the project, offering youth perspectives along the way.  

• CHILD-BRIGHT Tips for Patient-Partners Engaged in Patient-Oriented Research [EN/FR]: Strategies for PWLEs to engage meaningfully in POR. It walks through assessing motives and expectations, identifying skills and knowledge, exploring compensation, learning about the project and outlining communication strategies. It also explores the challenges and benefits of engagement. 

• CHILD-BRIGHT Tip Sheet on Engaging Youth in Research [EN/FR]: Outlines 8 tips for engaging youth in patient-oriented research projects. 

• CHILD-BRIGHT Cultural Safety, Sensitivity, and Humility in Action [EN/FR]: This infographic outlines ways in which cultural safety, humility and sensitivity can be seen in action in different spaces, including healthcare, research, and policy. 

• CHILD-BRIGHT Exploring Indigenous Health and Well-Being [EN/FR]: This infographic gives and overview and explores the factors that have affected Indigenous identity, health, and well-being in Canada. 

• CHILD-BRIGHT Honouring Progress: Key Milestones in Indigenous Health [EN/FR]: This infographic gives an overview of the timeline for Indigenous Health Milestones from pre-1600s to 2023+. 

• CHILD-BRIGHT: NYAP & SibYAC’s 10 Tips for Researchers [EN/FR]: Articulates the impact of language and vocabulary, outlining objectives and roles, and the importance of accessibility in engaging with young people. 

• CHILD-BRIGHT Network’s “What’s my why” series: Highlights why you should prioritize POR and explores the impact of POR, PWLE participation in health research, and initiatives moving forward to empower engagement in research. Offers up resources and tools for enhancing POR, and engaging youth and PWLEs in research. 

• Engaging Northern Youth: Findings to help health researchers and others involved in the health system better connect with youth. 

• Designing a tool to support patient and public involvement in research projects: the Involvement Matrix: The Involvement Matrix is a tool developed to enhance patient and public involvement in research projects. Created through a co-creation process involving patients, their relatives, and researchers, the tool helps define and discuss patient roles in research. This matrix aids in planning and evaluating patient involvement, promoting more effective and meaningful participation in research. Future steps include sharing experiences and assessing the tool's impact. 

• Conducting Patient-Oriented Research in Pediatric Populations: A Narrative Review: This review offers guidance on conducting patient-oriented research (POR) with pediatric populations. It describes pre-study planning, engagement throughout the research cycle, and reporting and evaluation. 

• The ultimate power play in research - partnering with patients, partnering with power: This publication offers practical recommendations for researchers and for patient/public partners to share power more equitably on research teams.  

• Benefits, barriers and recommendations for youth engagement in health research: combining evidence-based and youth perspectives: This review provides recommendations on youth engagement that focus on supporting youth by offering flexible communication approaches, mentorship opportunities, diverse and inclusive recruitment, and ensuring youth understand the commitment and benefits involved. 

• Indigenous participation in pediatric Indigenous health research in Canada: a systematic review: This review examines Indigenous involvement in pediatric health research in Canada, identifying key challenges and strengths to enhance research practices and ethics, and improve relevance to Indigenous communities. 

CHILD-BRIGHT Lived Experience Consultation Service [EN/FR]: Describes opportunities for researchers external to CHILD-BRIGHT looking to incorporate PWLE perspectives into their research projects. Reviews the process, decision-making criteria, and preparations for consultation. 

• Compensating Patient Partners in Research: Review of Guidance and Policies Across Canada:Financial resource summarizing the various compensation policies across the SPOR SUPPORT Units in Canada. Provides high-level and detailed summary of compensation for one-time commitments, participation in a council or working group, or role of knowledge keepers as well as details regarding expenses. 

• CHILD-BRIGHT Compensation and Recognition Guidelines for Partners with Lived and Living Experience (PWLE) [EN/FR]: These guidelines outline the compensation and recognition guidelines for PWLEs involved in distinct roles, commitments and compensation for PWLEs involved in research, network activities, and those that generally participate in other capacities. 

• CHILD-BRIGHT First Nations, Métis, and Inuit Peoples Compensation Guidelines [EN/FR]: CHILD-BRIGHT is committed to fair compensation for all contributors, including advisory council members. This page outlines how we developed compensation guidelines for First Nations, Métis, and Inuit Peoples. 

• Alberta SPOR Support Unit (ABSPORU ): Terms of Reference (ToR) Template:This template can be used to assist research teams and other groups in the co-development of terms of reference with their knowledge users and in particular their patient / public members. 

• McMaster University Public and Patient Engagement Collaborative: Compensating Patient Partners in Research:Review of Guidance and Policies Across Canada: Financial resource summarizing the various compensation policies across the SPOR SUPPORT Units in Canada. Provides high-level and detailed summary of compensation for one-time commitments, participation in a council or working group, or role of knowledge keepers as well as details regarding expenses. 

• SPOR Evidence Alliance (SPOREA): Patient and Public Partner Financial Compensation Policy and Protocol [EN/FR]: This document outlines policies for recognizing and compensating patient and public partners in the Strategy for Patient Oriented Research Evidence Alliance 

• Table 1 Strengths, Skills and Goals Matrix template from the full article: Development of the Strengths, Skills, and Goals Matrix: a tool for facilitating strengths-based adolescent and young adult engagement in research: Table 1 Strengths, Skills and Goals Matrix template from the full article: Development of the Strengths, Skills, and Goals Matrix: a tool for facilitating strengths-based adolescent and young adult engagement in research 

• Centre of Excellence on Partnership with Patients and the Public (CEPPP): Engagement Assessment Toolkit [EN/FR]: This toolkit provides healthcare and research practitioners with tools to scale, survey, assess, evaluate and measure community engagement activities. 

• SPOR Evidence Alliance (SPOREA): Patient and Public Engagement Request for Researchers: A tool designed for researchers wishing to request support from the SPOR Evidence Alliance in identifying and engaging patients and/or members of the public in research projects. 

Public and Patient Engagement Evaluation Tool (PPEET): The Public and Patient Engagement Evaluation Tool (PPEET) is a series of three questionnaires to evaluate public and patient engagement.