Introduction
Embedding principles of Inclusion, Diversity, Equity, and Accessibility (IDEA) into Can-SOLVE CKD Network operations and outcomes is a key priority for Phase 2 (2022-2026). To understand the network’s existing IDEA strengths and future directions, Can-SOLVE CKD Network conducted a network-wide IDEA audit from June 2023 to January 2024.
This report outlines the results of the audit.
Summary
Can-SOLVE CKD Network members – including patient partners, research teams and staff – were invited to participate in one or more of seven interactive virtual workshops to identify successes, challenges and recommendations for incorporating IDEA principles into the fabric, work, and identity of the network.
The IDEA audit was structured in such a way that each workshop asked participants to identify the ways that IDEA principles are promoted and can be further strengthened within the network.
Asking participants to self-reflect on their own engagement in the network and expand upon IDEA-focused dialogue and biases encouraged a shift towards IDEA sensitivity through the act of participating in the activity itself. Findings from the audit indicate that overall, Can-SOLVE CKD Network offers a welcoming environment, in which patient partners’ voices and Indigenous ways of knowing are heard, valued, and promoted. There are some areas for improvement, including leveraging opportunities to expand diversity and equitable participation.
All comments were recorded verbatim as “sticky notes” on the online platform Mural. Duplicate comments were recorded to indicate recurrent themes. Across all seven audit sessions, a total of 441 entries were recorded.
Two members of the IDEA working group conducted a descriptive qualitative analysis to identify and extract common themes from the data, and four other members, including two patient partners, assisted in categorizing the results.
Results and Recommendations
Across the perspectives from patient partners and caregivers, researchers and research team members, and operations staff, three common overarching themes emerged: (1) support; (2) access; and (3) outreach.
These overarching themes represent how IDEA principles are applied within the network, and they describe the varied methods that IDEA principles are upheld and achieved.
These recurrent themes address both the current strengths of the network and potential opportunities for future improvement.
Within the overarching themes, four distinct categories emerged as sub-themes, including:
(1) people, participation, and representation; (2) supportive environment and community; (3) governance and structure; and (4) communication and engagement. The successes and future directions/recommendations for each sub-theme are described.
The following summary is organized into three parts based on the overarching themes: SUPPORT, ACCESS, and OUTREACH. The section on SUPPORT will address sub-themes 1 and 2. The section on ACCESS will address sub-theme 3, and the section on OUTREACH will address sub-theme 4. Each section will describe successes, lessons learned, and recommendations.
“Patient voices and lived experiences are in all phases of the research – it ensures the research we do meets the needs of clinical populations, and adds richness and direction”
Successes
Indigenous voices and ways of knowing
Indigenous Peoples’ Engagement and Research Council (IPERC) maintains a strong and active presence that permeates throughout the network, with national representation from various Indigenous communities and authentic patient engagement. The inclusion of traditional ceremonies, knowledge keepers, and sharing circles supports and encourages Indigenous ways of knowing, doing, and being. There is a network-wide investment in cultural competency learning and training opportunities, enhancing the network members’ collective understanding and respect for different cultural practices.
Diverse representation and team composition
Research teams and committees reported diversity in team composition representing urban, rural, ethnic, sex, age, and gender diversity, inhabiting various regions across the country, with efforts made towards identifying missing voices and reaching out to under-represented communities.
Patient partner empowerment and leadership
Patient partner perspectives are at the forefront; they feel heard and valued. Patient partners are afforded opportunities for building new skills. Lived experience and patient stories are central to research processes and have a direct impact on the network’s patient-oriented research approach. The Patient Governance Council (PGC) is at the heart of the network and is mandated to ensure the patient voice is guiding the work of the network; patient partners sit on numerous committees and are represented in the network’s leadership and steering committees.
“We are encouraged to share all voices in a safe and inclusive way – this allows for patient partners to have their say – no topic is off the table and I don’t think anyone feels like they ask ‘irrelevant’ questions. All thoughts and comments are encouraged in a very supportive way.”
Lessons learned
Increasing diversity in representation
While existing diversity was noted by participants, the need for increased leadership representation from Indigenous and Black nephrologists was voiced, as well as broader representation of Black, Asian, and LGBTQ2+ communities within the network.
Recommendations
Promote intentional representation and develop outreach programs specifically tailored to engaging underrepresented communities such as young mothers, pediatric patients, African, Caribbean, and Black (ACB), and Lesbian, Gay, Bisexual, Transgender, Queer, Intersex, and others (LGBTQ+) communities.
This could include community workshops, partnership with local organizations and/or other research networks, and tailored communication strategies that resonate with each group’s unique needs and challenges. Expand language translations of material for under-reached populations.
“Workshops allow connection and communication.”
Successes
Strong sense of community and a supportive environment
Members value the existing opportunities the network offers for teams and committees to form deep connections, including connecting in-person and through non work-related social events. Among researchers, Can-SOLVE CKD Network’s efforts to include trainees at events, such as the Annual Meeting, and encouraging involvement in committees, are appreciated.
Peer support
Patient partners, researchers, and staff feel supported and assist each other. Having a large group of patient partners to rely on helps reduce strain and demands.
Safety in communication
Network members are encouraged and supported to express all perspectives in safe and inclusive ways, with no topic being off-limits. Patient partners feel comfortable asking questions.
Accommodations to support accessibility
Explicit accommodations and supports are available for network members and companions (as needed), including flexible work hours and work-from-home options (for staff). Health-related leaves for patient partners are prioritized and supported, as are plain language support, health literacy support, preparatory meetings for supportive and collaborative engagement, various travel accommodations, and varied options for types of and levels of participation.
“[We support] openness to other ways of being & learning.”
Lessons learned
More accommodations around accessibility
Participants saw opportunities to increase accommodations and accessibility, in terms of physical accessibility (e.g., ensuring ramps and railings are in place along the stage at the annual meeting), offering content in different languages, ensuring inclusion of people who have limited access to technology or are less proficient with technology, and providing support to people who are visually or hearing impaired.
Opportunities for deeper connections
Social interactions and informal learning opportunities help build trust. However, there are mixed feelings around how people connect; some patient partners feel disconnected from researchers, while researchers express a need for better connections among other research teams.
Mitigating patient partner burnout
With a dedicated group of patient partners, it is important to ensure that the network does not rely too heavily on certain individuals to perform the bulk of the work. By involving a broader and more diverse group, the workload may be more fairly distributed.
“[We offer a] safe space for chronically ill and disabled team members to ask for accommodations and there’s no need to pretend you aren’t sick/disabled.”
Recommendations
Create more opportunities for patient partners to communicate directly with patients to foster a sense of community and shared experience. This could include an online forum, virtual meetups, and in person events designed specifically for the recruitment of patient partners.
Expand upon ongoing anti-racism and trauma-informed training by upholding principles of accountability and open dialogue. This may involve creating structured opportunities for open discussions about race, trauma, and inclusivity and assigning leaders to ensure adherence and completion of these resources.
Explore measures to avoid excessive workload and burnout, highlighting the need for improved offline and flexible participation options, clear communication of time commitments and expectations to address these challenges.
Offer opportunities for offline, asynchronous participation and flexible scheduling, particularly for recurring meetings. Meeting times should prioritize patient partners’ preferences.
Encourage mandatory breaks and holidays and provide resources for stress management.
Uphold a clear shared understanding of time commitment and boundaries through communication that reinforces acknowledgement and appreciates both current and ongoing contributions.
“There are lots of tools developed all the time to promote success of patient partners, [like the] modules.”
Successes
Non-hierarchical
The network has successfully implemented shared leadership and governance structures that are non-hierarchical, demonstrating respect for individual skills, expertise, and lived experiences. There are accommodations for different learning styles, and support from colleagues and leadership.
Administrative support
Central office support is highly valued, including the follow-through with reimbursement processes and financial assistance for attending in-person meetings. Staff are eager to facilitate travel arrangements to support attendance at in-person events. Flexible work-from-home options are important for those who are chronically ill and/or those who are not able-bodied.
Capacity building
Training opportunities for network members, such as online modules, courses, workshops, and webinars, along with resources like cultural safety training, toolkits, guides, and templates, support successful participation.
“Human-centred design as a core structure to researching, designing, developing, evaluating, and implementing innovations.”
Lessons Learned
Meetings and time commitments
Challenges exist in finding the balance in scheduling across different time zones, those who are retired vs. working during the day, and those who do not have reliable access to technology.
Recognition
Equitable and public recognition of all team members’ contributions is essential to effective collaboration.
Sustaining Can-SOLVE CKD Network
The ability to boost IDEA within the network will rely on long-term network planning and sustainability. Looking ahead, we will need to leverage new methodologies and diverse types of knowledge and expertise to sustain the networks’ research efforts.
Onboarding new patient partners
Patient partners felt that an orientation through a conversation or an explanatory video, along with a visual representation of the network, would be beneficial. Of note, there are existing onboarding materials and supports, but some patient partners are still unclear about the history, structure, and scope of the network. A fragmented understanding of network opportunities, and the network itself, limits active and equitable participation.
Recommendations
Establish feedback mechanisms to address workload issues and offer support, aiming to tackle barriers early and ensure that voices are heard and supported.
Develop a network of networks by partnering with other CIHR initiatives, groups, and organizations.
Leverage new sources of funding, such as technology companies, private donors, industry partners, and other businesses. Consider alternative funding models, like social capitalism.
Offer onboarding materials in multiple formats, including text, audio, video, and visual aids, to accommodate different learning preferences and needs.
Refine check-in procedures to capture feedback from new members about their onboarding experience and their understanding of the network.
“Promoting accessibility beyond the network – outreach efforts themselves need to be accessible.”
Successes
Openness
Network members felt there was openness to diverse ideas, ways of being, and learnings from other cultures. There is pride in, and respect for, culture, age, and religious differences.
Virtual and in-person connections
While Zoom and other technologies are popular and comfortable for many, in-person meetings offer valuable opportunities for learning, knowledge sharing, and building connections.
In-person events
In-person opportunities foster deeper connections, improve communication, create safe spaces, and enhance collaboration. Support for in-person Operation Team meetings in and out of the Vancouver office is encouraged.
Communicating success
Success stories and patient voices are captured in communication channels (newsletters and social media) and events such as conferences and presentations.
Resources
Supports are in place for including Indigenous Elders and Knowledge Keepers at events, along with their travel companions. Additionally, onboarding resources are available for incoming patient partners.
“People need to be more familiar with what the different opportunities are [like the newsletter] – making sure membership has access to that and highlighting this.”
Lessons Learned
Language Translation
Both patient partners and researchers underscored the need to communicate network implementation strategies and outputs in diverse languages. Can-SOLVE CKD currently translates its communications (e.g., newsletter, research outputs) into French. Network support for translation of materials should be communicated clearly, and the network could explore expanding translation services to additional languages.
Virtual and in-person meetings
There is a digital divide, with Zoom being popular for facilitating greater participation. However, there is also strong support for in-person meetings and hybrid formats, where groups can meet in-person at one or more locations, while offering streaming options for those who can only join virtually.
Patient recruitment
There are gaps in the representation of diverse communities and challenges in recruiting new members, especially from rural or non-urban areas, as well as Black, Asian, and LGBTQ2+ communities. Implementing more targeted outreach strategies could help improve diverse representation within the network.
Cross-team communications
There are concerns with duplication of efforts due to minimal cross-talk between research teams, which could benefit from the establishment of regular communication channels, development of a shared platform, and overall enhanced collaboration strategies.
Internal communications
There is limited exposure to information on how network members connect with internal network components and external organizations, as well as where to find this information. For instance, information about various opportunities for involvement within the network are not effectively communicated. Expanding and enhancing communication methods and strategies will expand collaborative opportunities.
Recommendations
Establish regular communication channels, such as regular meetings, webinars, or forums, where research teams can share challenges and successes and identify potential overlaps or areas for collaboration.
Leverage a shared platform that supports connections and knowledge exchange, such as the KT Community of Practice and the Can-SOLVE CKD website, to catalog ongoing recruitment and allow teams to easily access information and avoid duplicating efforts.
Offer opportunities for debriefing and include offline feedback in meeting minutes and reports. Avoid long gaps of non-communication between meetings and seek input from team members when planning meetings.
Enhance information sharing focused on prevention and health promotion in Indigenous communities.
Conclusions
Can-SOLVE CKD Network offers a supportive environment with a strong emphasis on listening to and highlighting the patient voice. This approach is highly valued by network members and fosters an inclusive and supportive organization.
The network recognizes the importance of embedding and supporting a strong IDEA ethic in all facets of its work. IDEA principles are embodied individually, as well as in the collective; from how work is conducted, to research processes and communication strategies.
The IDEA audit both highlights a strong sense of pride in the network and identifies areas of excellence as well as opportunities for improvement and future planning.
Acknowledgements
We thank all Can-SOLVE CKD network members who participated in the workshops for their time and contributions, including their honest feedback and suggestions for improvement.
The IDEA Advisory Board provided valuable guidance and support during the initial planning of the audit, through to the interpretation of the results, and in the generation of this report.
Data collection led by Keila Turino Miranda and Jocelyn Jones.
Data analysis led by Keila Turino Miranda with input from Charles Cook, Julie Wysocki, Michelle Hampson, and Melanie D. Talson.
Report compiled by Keila Turino Miranda, Selina Allu, Melanie D. Talson, and Jocelyn Jones.
Contact for more information: Jocelyn Jones (jjones@cansolveckd.ca)
Appendix 1:
The Can-SOLVE CKD IDEA Advisory Board:
Keila Turino Miranda, Selina Allu, Charles Cook, Heather Harris, Michelle Hampson, Taylor Hainstock, Jocelyn Jones, Letitia Pokiak, Dr. James Scholey, Melanie Talson, Claudia Wilde, Julie Wysocki.
Reference: Can-SOLVE CKD. (2024). Can-SOLVE CKD Network Inclusion, Diversity, Equity and Accessibility Audit; Successes and Lessons Learned. Report by Can-SOLVE CKD I.D.E.A. Committee. December 2024
