Partnership by design: co-designing an institutional framework for engagement at a leading Canadian pediatric hospital

Background

Healthcare institutions are increasingly recognizing the importance of implementing integrated processes for carrying out patient engagement in health systems improvement and research, however, concrete tools and guidance for doing so are needed. While frameworks for engagement exist, most are not specific to pediatric organizational settings where children, youth, families, and community members are engaged across the continuum of clinical care, research, and education. To address this gap, an organization-wide framework for engagement that would have relevance to clinical care, research, and education was co-designed with patient and family advisors and staff at a large pediatric hospital.

Objectives

This commentary aims to (i) describe the process of co-designing an organization-wide engagement framework; (ii) share lessons learned about the co-design process; and (iii) document the experience of the co-design process from the perspectives of family advisors and staff.

Main body

The framework development process consisted of several steps over the course of a year, including: (i) interviews and focus groups to identify advisor and staff priority areas, (ii) an environmental scan, (iii) a co-design process, (iv) patient consultation, and (v) a framework validation survey. This process revealed important learnings, including the importance of flexible approaches for collaboration, rapport-building, transparency about how advisor and staff input was being used, and highlighting the practical relevance of the framework and its implementation.

Conclusion

Developing an organization-wide framework for engagement uncovered key challenges and insights related to co-design, resulting in a ready-to-implement framework. Evaluations indicated the co-design experience was positive and impactful for members. The methods employed in this initiative can be applied to various healthcare settings.

Patient or public contribution

The framework development process involved collaboration with patient and family advisors to bring their crucial insights to its content and design. This article was co-authored with family advisors.

Supplementary Information

The online version contains supplementary material available at 10.1186/s40900-026-00838-z.

Plain language summary

Healthcare institutions understand the importance of engaging patients, families, and the community to ensure the health system meets the needs of those who rely on it. Most existing engagement frameworks are not specific to pediatric settings where children, youth, families, and community members are engaged in clinical care, research, and education. This commentary describes the process of co-designing an engagement framework for a pediatric hospital in Toronto, Canada. The process included: holding interviews and focus groups to identify patient, family, and staff priority areas; looking broadly at the healthcare engagement landscape to identify trends and gaps; committing to a co-design process to create a framework for engagement; and inviting the broader hospital community to provide their input via a survey. This process resulted in a ready-to-implement framework that provides guidance on how to effectively engage in a pediatric healthcare setting where clinical care, research, and education happen. Those who participated in its creation reported that the experience was positive and impactful and that the framework reflects the needs and priorities of those with lived experience. The methods described in this paper can be applied in various healthcare settings where maximizing engagement with patients, families, and the broader community is a priority.

Supplementary Information

The online version contains supplementary material available at 10.1186/s40900-026-00838-z.

Background

Patient engagement can be defined as active collaboration between patients, family members, clinicians, researchers, and administrators to ensure the health system reflects the needs of those who use it [1, 2]. Healthcare institutions are increasingly recognizing the importance of implementing integrated processes for carrying out patient engagement in health systems improvement and research, as evidenced by inclusion in their strategic plans [3–7]. Previous research indicates the importance of institutional support in the operationalization of patient engagement, including trained staff and funding [6, 8, 9]. Organizational readiness for patient engagement, including willingness to implement engagement activities, a shared organizational vision for engagement, and incorporating feedback mechanisms, has been identified as a key driver in the success of such initiatives [8, 9]. While patient engagement in healthcare service design and delivery is an established area of practice, concrete tools and guidance on implementing these approaches within organizational settings are required.

Frameworks for engagement can support researchers, clinicians, and patient/family advisors in articulating the values, approaches, and resources required to enable effective engagement. Several frameworks exist to support quality engagement in clinical care and research [1, 10–12]. However, most are not specific to pediatric organizational settings where children, youth, families, and community members are engaged in health systems improvement. Context-specific considerations which account for the developmental stages of patients, strategic alignment, the needs of advisors, institutional culture, and resourcing are required when introducing frameworks to organizational settings. Unique aspects of engagement within pediatric settings include establishing safe and ethical practices when involving child and youth advisors, balancing the needs of patients and their parents/caregivers, and addressing the evolving roles of parents/caregivers as their children grow and develop in engagement spaces [13]. Further, few frameworks have been developed with the aim of being applied across the continuum of clinical care, research, and education within pediatric institutions. These three pillars are common in academic hospitals where activities associated with service delivery, research, and teaching co-occur and continuously inform one another. Patient and family advisors are often motivated to share their lived experiences to produce meaningful change in all of these areas. However, without consistent guidance and best practices as to how to effectively engage across these domains in an organizational setting, advisors may be left feeling tokenized, (re)traumatized, powerless, and hesitant to continue engaging [14, 15].

To address these gaps, an organization-wide framework for engagement that would have relevance to pediatric clinical care, research, and education was developed with patient and family advisors and staff. This effort was rooted in the principles of co-design [16], where advisors and staff members were active collaborators in devising solutions to the issues faced in the daily practice of engagement.

Objectives

This commentary aims to: (i) describe the process of co-designing an organizational-wide engagement framework; (ii) share lessons learned about the co-design process; and (iii) document the experience of the co-design process from the perspectives of family advisors and staff.

Organizational context

This initiative was undertaken at the Hospital for Sick Children (SickKids), a quaternary pediatric teaching hospital located in Toronto, Canada. The SickKids enterprise consists of the SickKids Hospital, which provides specialized care to children and their families, the SickKids Learning Institute, which supports the education of patients, families, staff, and trainees, and the SickKids Research Institute, which conducts high-quality research from pre-clinical to bedside [16–18].

Since 2013, SickKids has implemented a distributed model of patient engagement across its Hospital clinical care spaces, Learning Institute, and Research Institute. The Family Advisory Network (FAN) supported clinical improvement, program design, and patient-facing materials within the Hospital clinical care departments, supported by policies for recruiting and onboarding volunteer advisors. All FAN members, including youth between the ages of 12–19, were volunteers and received no compensation for their engagement activities. In the Learning Institute, a combination of FAN members and other patients and family advisors were engaged to support the development of patient-facing educational resources shared on AboutKidsHealth, and shared their lived experiences at staff orientations, workshops, and other learning events [19]. In the Research Institute, individual research teams recruited their own patient and family advisors to join their research teams or participate in research family advisory committees, often guided by Canada’s Strategy for Patient Oriented Research (SPOR). To strengthen this work, the Patient Engagement in Research (PEiR) Program was launched in 2018, offering consultations, training, and advisor matching. Family advisors supporting research were often provided an honorarium in alignment with SPOR’s honorarium policy [1].

This distributed model of engagement, where clinical, teaching, and research teams independently involved patients and community members in their work, resulted in inconsistent and variable engagement practices and highlighted the need for an approach to engagement that was grounded in consistent guiding principles and a shared language. Advisors voiced the need for a more consistent engagement experiences across all the engagements they participated in, regardless of whether it be in care, research, or education. Further, researchers, clinicians, and hospital administrators (henceforth referred to as ‘staff members’) cited a lack of adequate guidance for integrating, scaling, and evaluating quality engagement practices across the institution. These calls to action from advisors and staff in combination with a series of institutional priorities served as drivers in the development of the Office of Patient, Family and Community Engagement (OPFCE) in 2024; a dedicated team of trained staff members who support high-quality and consistent engagement experiences throughout the organization [14].

Methods

The framework development process consisted of several steps over the course of a year, including: (i) interviews and focus groups to identify advisor and staff priority areas, (ii) an environmental scan, (iii) a co-design process, (iv) patient consultation, and (v) a framework validation survey. This process was driven by advisor and staff needs, experiences, and priorities, with their perspectives serving as the connecting thread across phases. Each step in this project informed subsequent steps, such that advisors and staff input shaped how the environmental scan was undertaken, how the co-design process was developed and enacted, and how the validation exercise was implemented. The approach was grounded in patient and community engagement in research principles [9, 14] whereby patients, families, and caregivers act as active and meaningful partners in the process. The co-design team included three researchers (one of whom also has lived experience as a family advisor), a program manager, a clinician-researcher, and a family advisor. All members of the co-design team played pivotal roles in reflecting on and presenting the findings of the co-design process. In addition, this initiative was supported by a broader project team encompassing the co-design group (consisting of family advisors and staff) and the OPFCE team, which included a child and youth engagement specialist, and research and clinical engagement specialists. The broader project team reviewed advisor/staff priorities and the results of the environmental scan and provided feedback on the framework at various timepoints.

The methods associated with each of these steps are detailed below. Research ethics board approval was not required, given this initiative fell within the mandate of the OPFCE.

Identifying advisor and staff-driven priorities

The SickKids FAN consists of approximately 90 ‘family advisors’: patients, family members, and other caregivers who willingly share their lived experience to improve care, research, and education at SickKids. Extensive consultation to glean insights into the ‘current state’ of engagement at the organization was undertaken with members of this network and staff from June to September 2024.

Seventy interviews were held with family advisors (n = 35) and staff members with experience in engagement (n = 35), which focused on their most pressing priorities, challenges, and hopes for improving engagement. These were conducted by OPFCE staff, including the program manager and a clinical engagement specialist. The primary aim of the interviews was for the OPFCE to build and improve relationships with advisors and staff by understanding their experiences in order to build tools and resources to strengthen engagement. Through a thorough review of notes taken during these advisor and staff-driven conversations, OPFCE team members developed key insights regarding advisor and staff priorities. These included the importance of: (i) consistent engagement experiences for advisors and staff; (ii) alignment of advisor and staff expectations regarding the goals and impact of engagement; and (iii) a sense of community in engagement at the institution. Based on these learnings, a series of virtual focus groups (n = 5) were hosted to delve further into these concepts. A total of 35 individuals attended these focus groups, including 27 advisors and 8 staff members. The OPFCE team developed several key themes by reviewing, reflecting on, and identifying patterns within notes taken during the focus groups. Participants cited a need for greater transparency and consistency. Specific suggestions for doing so included: establishing one shared definition of ‘engagement’; defining a standardized method of engaging across clinical, research and education spaces; and clarifying staff and advisor roles, as well as different approaches to engagement and the opportunity for impact. Advisors and staff shared that participating in work to improve patient and family experiences can be emotionally burdensome, and even (re)traumatizing. All participants cited a need to prioritize mutual respect and psychological/emotional safety and to champion a culture shift, in which lived experience is recognized as a vital form of expertise. Specifically, they advocated for guiding principles that will allow for consistency in engagement across the organization, and tools, resources and training to help staff and advisors engage in mutually respectful, productive relationships. Participants outlined the need for greater visibility of the impact of engagement activities, including: clear communication channels for reporting back to advisors on how their input was used; creating an evaluation system to track and report on the value and impact of engagement; and ensuring that engagement activities align with institutional priorities and drive meaningful, ‘big picture’ change.

Environmental scan

To supplement the learnings from the interviews and focus groups, an environmental scan was conducted by two OPFCE staff members to identify existing frameworks and resources that could form the basis of an organization-wide framework draft to meet the needs of advisors and staff. The environmental scan was conducted between September and December 2024. The websites of targeted organizations, funders, and institutions with expertise in patient and family engagement were searched to identify frameworks informing engagement in health research and/or clinical care. A focus was placed on Canadian organizations given the institutional context of the initiative, however a select number of international resources were reviewed given their prominence in the field. A total of 15 documents were intentionally selected and reviewed (see Supplementary File 1 for further details). Common features of the frameworks were identified, including purpose statements, key definitions, an articulation of guiding values, and a variety of engagement approaches or ‘levels’, and relevance to the institutional setting of the project was considered. Some frameworks listed institutional enablers, while others emphasized the importance of organizational structures to support quality engagement. These documents provided a starting point for the OPFCE team to consider when adapting and/or developing elements that would suit the organizational context. Further, gaps in existing frameworks were identified in order to establish additional elements specific to a large pediatric institution. These gaps included: (i) a lack of focus on the unique needs of pediatric patients and their families/caregivers; (ii) limited relevance to engagement spanning across the continuum of care, research, and education; (iii) an absence of practical guidance to support implementation. The interview and focus group data, in combination with information from the environmental scan, were used to compile a high-level framework draft (consisting of tentative headings, definitions, values, and levels of engagement) which were brought to a co-design group for collaborative development.

Co-design group

To form the ‘framework co-design group’ and incorporate the insights of advisors and staff, the OPFCE team selected individuals with at least one year of experience in quality improvement projects related to engagement. The team invited five staff members, four advisors, and one individual who identified as both. This group of nine women and one man possessed a collective experience that represented a diversity of perspectives (i.e., clinical, research, education; cultural diversity; pediatric care experience; mix of newer and ‘seasoned’ staff and advisors). The invitation to join the co-design group included information about the time commitment of three meetings and asynchronous work between February and May 2025: Orientation (1 h); Co-Design Session (2 h); and Framework Revisions/Validation Planning (1 h), for a total of four hours. All meetings took place virtually at mutually agreed upon times to accommodate a variety of schedules. Advisors were compensated at $25/hour for four hours.

The objective of the group was to co-design an organization-wide engagement framework that described best practices for engaging with patients, families, and the community to deliver the highest quality of care through impactful research, delivery of high quality education and exemplary patient and family experiences. A secondary goal was to consider practical use cases for applying the framework to strengthen engagement. The co-design group employed a combination of inclusive and participatory ways of working together to ensure all voices were heard and considered equally [16]. These were introduced and discussed amongst the group at the first virtual meeting. Implementing a set of group guidelines for virtual meetings to create a safe and collaborative environment for all group members, based on established co-design principles [16], was a key priority. Agreed upon guidelines included the importance of respecting all perspectives, maintaining confidentiality, listening actively, making space and taking space intentionally, using technology thoughtfully, assuming positive intent, and the option to step away from the work if needed, with the full support of all team members. The group also developed a shared decision-making agreement that outlined how to reach consensus or how to proceed when there was not unanimity around a given decision/direction.

Prior to all virtual co-design sessions, ‘pre-reads’ were circulated, which included agendas, high-level goals for meetings, and ‘thought starters’ to orient members to the co-design process. This ensured that regardless of a group member’s previous experience with co-design, each member could feel comfortable and confident in their ability to contribute.

The first meeting provided an orientation to the project, including an overview of: the co-design process; rationale for the framework; examples of similar frameworks; engagement framework components; and a brief which summarized the focus group insights. Before the first session, group members were invited to share their motivations for participating. These reflections were shared at the first meeting, which fostered quick rapport-building amongst the team and set the stage for productive collaboration (see Fig. 1). Following the first meeting, an optional feedback template was provided to aid members in completing an asynchronous review of the draft framework (see Supplementary File 2).

Fig. 1.

Shared motivations of the framework co-design group members

The second co-design meeting began with a ‘Rapid Fire Roundtable’ discussion to allocate equal time for each member to express a pressing thought regarding the draft framework they had reviewed and the revisions they wished to see. This format of sharing resulted in a collaborative discussion focused on concrete changes to the framework. Following the second session, a ‘Revisions Table’ was circulated to transparently communicate how the discussion informed the framework revisions (see Fig. 2.) Next, group members were invited to provide additional feedback on the framework post-revisions by email or through 1:1 meetings; both options were employed.

Fig. 2.

Revisions table template

The final meeting focused on a plan for validating the framework’s content with the broader SickKids community and brainstorming implementation strategies and tools. The insights obtained via this method of collaboration resulted in significant revisions to the framework draft, which reinforced the vital importance of building several modes of communication, collaboration, and revision into the co-design process.

Patient consultation

Following the co-design process, an invitation to review the framework was sent to the hospital’s patient advisory council, a group of 18 patients between the ages of 12–18. A focus group was co-facilitated by two OPFCE staff and a Child and Youth Engagement Specialist and prior to the meeting of the group, a pre-read was circulated to council members, which shared the focus group goal of obtaining actionable feedback to ensure that the framework was reflective of the child and youth voice and a series of ‘thought starter’ prompts, such as “Are there changes we need to make to better capture the child/youth voice?”

Four members of the patient advisory council attended. Their collective feedback resulted in significant changes to definitions of the core values outlined in the framework given the need to focus on emotional/psychological safety for pediatric patients in particular. The council members expressed tremendous support for other components of the framework, which assured the co-design group that the framework was resonating not only with staff and family advisors (representing parents of patients), but also met the developmental needs of patients themselves.

Framework validation

Once the framework was solidified by the co-design group, the team sought to validate its content with a large and diverse pool of individuals. A brief validation survey was developed by the co-design group to gather feedback on the framework to ensure it reflected and supported the needs of the SickKids community. Ten questions focused on the framework content (see Table 1) and six gathered (optional) demographic information about respondents.

Table 1.

Validation survey questions

Question	Response Option(s)
1. This document helps me understand what engagement means.	• Strongly agree • Agree • Neutral • Somewhat disagree • Strongly disagree
2. This document helps me understand what values guide engagement activities at SickKids.	• Strongly agree • Agree • Neutral • Somewhat disagree • Strongly disagree
3. The values outlined in this document align with my hopes for engagement at SickKids.	• Strongly agree • Agree • Neutral • Somewhat disagree • Strongly disagree
4. The table outlining engagement approaches, goals, and activities helps me understand the ways I can lead or participate in engagement activities at SickKids.	• Strongly agree • Agree • Neutral • Somewhat disagree • Strongly disagree
5. This document will help me when leading or participating in engagement activities at SickKids.	• Strongly agree • Agree • Neutral • Somewhat disagree • Strongly disagree
6. Did any part of the document feel unclear or need further explanation? If so, please describe.	Open-text
7. Is there anything you feel is missing from the document?	Open-text
8. How do you see yourself using this document to guide your actions when leading or participating in engagement activities at SickKids?	Open-text
9. In addition to this document, what is one thing you would like to see the Office of Patient, Family and Community Engagement do/provide/create to make it easier for you to lead or participate in engagement activities at SickKids?	Open-text
10. Is there anything else you’d like to share?	Open-text

Purposeful and snowball sampling methods were used to identify relevant individuals within the organization to complete the framework validation exercise. First, a list of individuals at SickKids with varying levels of experience in patient and family engagement in clinical care, education, or research, was compiled by the team. These individuals were invited via email to review the framework and respond to the survey via Microsoft Forms. They were informed that their responses were voluntary and would be anonymous. In addition to purposeful sampling methods, individuals (including managers/directors) who received the initial email invitation were invited to forward the framework/survey link to those within their networks, consistent with snowball sampling methods. The draft framework and survey link were distributed to a total of 307 individuals (158 staff/trainees, 149 advisors), and the survey was kept open for a 3-week period. A target of 50 survey responses was set based on prior work in this field and guidelines for obtaining open-ended feedback using qualitative methods [20, 21].

Results

Impact of co-design on framework

The framework evolved significantly as a result of the co-design process. This evolution included substantive changes to language to reinforce the notion of mutual respect and partnership between staff and advisors, meaningful changes to the definitions of the guiding values, and the addition of a definition of staff, which was not present in the first draft.

The most consequential change to the framework as a result of the co-design process was reconceptualizing engagement from a ‘spectrum’—in which there are increasing levels of impact that correlate to different engagement approaches—to a ‘wheel’—predicated on the notion that all engagement approaches have the potential to be highly impactful when the right resources are in place, when expectations are aligned, and when the engagement approach matches the goal of engaging (See Fig. 3; Supplementary File 3). This was an extremely significant, philosophical shift to the ‘heart’ of the framework that brought all other components together in a way that resonated with all team members. This change also reflected the key priorities expressed by advisors and staff through the interviews and focus groups that preceded the framework draft. An emphasis on consistent and transparent engagement opportunities with the potential to make an impact across the continuum of care, research, and education was highlighted in both phases of the framework development process.

Fig. 3.

Visual outlining how the co-design process impacted framework components

Experience of co-design group members

Following completion of the co-design work, group members were invited to reflect on the engagement experience by completing the Patient and Public Engagement Evaluation Tool [22, 23]. Of the 10 group members, six completed the survey (three advisors, two staff members, and one who identified as ‘other’). The co-design group collaborated over several months using primarily virtual and asynchronous methods. While these approaches offered flexibility, for participants to contribute according to their capacity, it also contributed to reduced engagement and eventual drop-off among some members, which explains the four missing survey responses. Individuals who dropped off participation in the process cited challenges balancing significant family responsibilities and healthcare issues which highlights the practical realities of sustaining participation in long-term projects. These gaps warrant further reflection on how future co-design initiatives can strengthen engagement and accountability to uphold the integrity of the model. Likert scale responses from group members indicated high levels of satisfaction with the co-design initiative, the diversity of perspectives represented in the group, and the level of support provided by the team. The open-ended responses highlighted that group members valued the opportunity to contribute to the framework and felt their input was appreciated, as was described by one member, “I felt heard and that my input was valuable and appreciated.” Some members noted the importance of clear goals and practical application of the framework in the implementation phase: “I hope the framework is used, although I do think we need to be more clear on how to use it so that it becomes more than a theoretical discussion and actually is put to use.” Lastly, a few individuals suggested improvements to the co-design process, such as smaller group sizes and more explicit guidance on how the framework would be used. Overall, the feedback from the group revealed the initiative was positively received, with members feeling engaged and optimistic about the framework’s potential impact, while also identifying areas for further clarity. These learnings and suggestions will be applied in future engagement activities conducted by the team.

Validation results

A total of 57 individuals completed the framework review and validation survey in June 2025, including advisors (patient, caregiver, family, community) and staff/trainees. Demographic characteristics of the sample of respondents are outlined in Table 2. Notably, respondents endorsed varying levels of experience within the field of patient and family engagement.

Table 2.

Validation survey respondent demographics (N = 57)

Demographic Characteristic	Respondents n (%)
Connection to SickKids Lived Experience Advisor SickKids Staff Member SickKids Trainee Other (not specified)	23 (40) 30 (53) 2 (4) 2 (4)
Age Range 12–18 years 19–34 years 35–64 years 65 years or older Prefer not to say	2 (4) 10 (18) 36 (63) 4 (7) 5 (9)
Gender identity Girl/woman Boy/man Nonbinary Genderfluid or genderqueer Prefer not to say	42 (72) 9 (16) 1 (2) 1 (2) 5 (9)
Underrepresented group membership Persons with disabilities Racialized individuals Individuals from 2SLGBTQIA + communities Individuals who do not speak English as a first language Prefer not to say Other (not specified)	7 (11) 10 (16) 3 (5) 2 (3) 6 (10) 1 (2)
Level of experience with patient and family engagement None Beginner Intermediate Advanced Expert	4 (7) 11 (19) 23 (40) 15 (26) 4 (7)

Responses to the Likert-type questions indicated high levels of agreement with statements regarding the framework’s utility in helping respondents understand engagement, its guiding values, and specific engagement activities that can be employed at SickKids. These results provided reassurance that the co-design group had developed a resource that was accepted and endorsed by a diverse range of advisors and staff. Through open-ended feedback, most respondents shared that they felt the framework was clear, thorough, and easy to follow. Many spoke to its value in guiding engagement planning and execution, and facilitating communication between advisors and staff through a shared understanding of key terms, engagement approaches, and expectations. Respondents made note of opportunities to improve the flow of the framework and to revise specific terminology for clarity. They also suggested developing resources to support the implementation of the framework in practice, and many outlined specific tools that would support its application in real-world scenarios. These suggestions formed the basis for another round of revisions to the framework that involved re-positioning certain elements, adjusting language, adding contact information for the OPFCE, and shortening the introduction for clarity. The co-design group was invited to review the final version of the framework following this round of revisions, and no additional feedback was received. The validation exercise demonstrated that the co-design process was successful in producing a framework that was widely applicable and relevant to the organizational context.

Learnings about co-design

Though significant preparation occurred in advance, the process of co-designing the framework took longer than anticipated, which led to the challenge of sustaining engagement over a prolonged period. There were occasional challenges achieving group consensus. In these instances, the team utilized appreciative inquiry [24] to foster understanding among the group. Additionally, the theoretical nature of a framework meant that, at times, the group struggled to envision the practical implications of the framework on engagement work happening within the organization. Inclusion of the ‘operationalizing the framework’ objective in the co-design process was one way that the planning team sought to mitigate this, by reinforcing the notion that while a framework is theoretical, there are ways to make it actionable. One output that resulted from this focus was a list of practical tools and resources to accompany the framework, including a framework implementation guide with ‘real world’ case studies and examples of how to bring the framework concepts to life in clinical, research and educational settings.

Discussion

This commentary outlines the process, impact, and value of employing co-design methods to bring the perspectives of advisors and staff to an organization-wide framework for engagement. Through flexible and iterative processes, diverse perspectives were sought in the framework’s content, design, and presentation, resulting in a final product that reflects the needs of the SickKids community. The principles of co-design were honoured through this process [16] by way of collaborative decisions about framework language, design, and structure.

The co-design process and resulting framework embed pediatric-specific priorities by emphasizing emotional safety and co-learning. These values ensure children are protected from harm that can arise when their voices are overlooked, while supporting them and their families to build confidence, manage their illness, and recognize the importance of their own lived experience. The most significant innovation was shifting from a traditional ‘spectrum’ of engagement to a dynamic ‘wheel,’ recognizing that any approach can be impactful when resources, expectations, and goals align. This model ensures consistent, transparent opportunities for meaningful engagement across care, research, and education—tailored to the unique needs of children and families.

While the validation exercise resulted in mostly minor modifications to the framework’s presentation and flow, this step assured the co-design team that the framework resonates with a diverse pool of advisors, staff, and trainees. The resulting framework and accompanying implementation guide are being prepared for launch, with the goal of increasing advisor and staff knowledge of varying approaches to engagement, guiding values, and institutional facilitators to enable improved experiences, enhanced accountability, and culture change. In addition, the framework is being embedded within the OPFCE’s engagement evaluation, with items included in the measure to assess if the stated engagement approach (inform, consult, involve, shared leadership) aligns with advisor and staff expectations post engagement.

The framework co-design process was not without its limitations. While we purposefully selected individuals with varying backgrounds and years of experience in the field of patient engagement for our co-design group, we elected not to collect or report on the demographic characteristics of these individuals. We recognize the perspectives of a small group of people with prior involvement in engagement initiatives at SickKids cannot capture the range of opinions or views present in the broader organizational community. In spite of our best efforts to validate the framework with a diverse pool of advisors and staff, most survey respondents did not report belonging to any underrepresented groups. The perspectives of racialized individuals, those who do not speak English as a first language and people from 2SLGBTQIA + communities were underrepresented in our sample. This is an important limitation that will be addressed by the OPFCE as the framework is launched, socialized within the institution, and implemented. The implementation guide, which includes accessible tools and infographics that can be adapted for use in a variety of contexts, is one way of actioning this priority. We also anticipate the framework and its accompanying implementation guide will evolve as the needs of the community become clearer through their launch. A key priority for the OPFCE moving forward is to build and strengthen relationships with individuals from equity-deserving groups to determine how to meaningfully engage with these communities and adapt the framework accordingly to meet the needs of those from diverse backgrounds, income levels, gender identities, and cultural groups. Further, we anticipate partnering with those from underrepresented groups to develop supplementary tools, resources, and guidance on culturally safe engagement practices that can accompany the framework. The framework was also only validated with members of the SickKids community. However, given our project employed an advisor-led approach, we hope this framework can be applied to other institutions that aim to engage both pediatric and adult patients across clinical care, education, and/or research initiatives.

Conclusion

The process of developing an organization-wide framework for engagement shed light on the challenges and learnings particular to co-design and resulted in a framework that is ready for implementation. Evaluation of the co-design process indicated the experience was positive and impactful for members and outlined the value of flexible approaches for collaboration, rapport-building, and transparency about how their input was being used. The methods employed in this initiative are transferable to a variety of healthcare contexts where collaborative development is prioritized. Key considerations for teams hoping to apply co-design methods to engagement framework development within their own institutions include the importance of financial resources to compensate advisors, protected time for staff leading the efforts, support from senior leadership and/or alignment with institutional priorities, and early and ongoing collaboration with equity, diversity, and inclusion teams to ensure adequate representation of perspectives and culturally appropriate engagement methods. It is hoped that the information shared in this commentary will help others to build meaningful partnerships and refine approaches to engagement that are grounded in the priorities and lived experiences of patients, families, and communities.

Supplementary Information

Below is the link to the electronic supplementary material.

Abbreviations

OPFCE

Office of Patient, Family, and Community Engagement

Author contributions

BA, CJ and FB conceptualized the commentary. BA and CJ co-led the co-design process, completed data collection, and completed data analysis. BA, CJ, and KH drafted the article. KH and BC participated in the co-design process. BC, FB, and JO substantially revised the article. All authors read and approved the final article.

Funding

This project did not receive grant funding from any funding agency in the public, commercial or not-for-profit sectors.

Data availability

The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.

Declarations

Ethics approval and consent to participate

Not applicable.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.