Can-SOLVE CKD Patient Council (PC) Overview and Terms of Reference

Can-SOLVE CKD Patient Council (PC) Overview and Terms of Reference The Patient Council (PC) is the core of the Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) Network. The PC partners patients, caregivers and kidney donors with researchers, health care professionals, renal agencies and policy makers to provide direction and guidance on how to improve kidney health and care through research. Through their unique perspectives and experiences, the members of the PC will collaboratively build on the work already undertaken by the various stakeholder groups in developing, executing and evaluating the Can-SOLVE CKD Network. Goals & Objectives of the Patient Council The Can-SOLVE CKD PC provides an opportunity to link researchers and policy makers with an engaged group of patients and caregivers who have lived experience or provided care for those living with kidney disease. Together, the research team and the PC will work to achieve the Can- SOLVE CKD goals, and will form a change in culture for both patients and researchers regarding levels of engagement from patients in research. Specifically, the Patient Council will: lead and guide the Can-SOLVE CKD Network, including providing feedback based on their experience on proposed research projects to ensure relevance and increase the impact of the project results; create and demonstrate the value and impact of patient partnership in research; work side-by-side with researchers and others to understand how patients can be involved in research activities including providing feedback on tools or materials to be used in studies, e.g. consent form etc. ensure that patients are involved in all the Can-SOLVE CKD committees in order to engage in an ongoing, mutually informative and educational partnership between patients and researchers; assist in organizing patients to participate within research projects within each of the theme areas; champion for change in the culture of research for patient-oriented research in the kidney community and to Canadians through involvement in the Can-SOLVE CKD Network; take part in other activities which may include: o determine what information, tools and processes patients want and need in order to be fully engaged in all phases of research. This includes all phases of the research process from question formation to result circulation (including the development of a curriculum or information modules, and recruitment of other patients for participation); o link the research team with other patient stakeholders including the Kidney Foundation of Canada (KFOC), and other patient groups, or organizations; o mentor the incoming patient partners who will be participating in the PC Note that this document represents a draft. As the PC becomes more established and as the Can- SOLVE CKD Network progresses, changes will likely be required. Page 1 of 10

Accountability of the Patient Council The PC reports to the Steering Committee of Can-SOLVE CKD while being accountable to the function, activity and spending of the Council. The PC will liaise with the Indigenous Peoples Engagement and Research Council (IPERC), which consists of Indigenous patients, Indigenous scholars and health care professionals. Members are also encouraged to communicate with relevant stakeholder groups, represented by the individual members. Leadership & Membership of the Patient Council The PC will be comprised of 25-30 patients and caregivers with lived experience in kidney disease from across Canada. We will strive to have age, sex, gender, ethnic and geographical diversity, to include patients at varying stages of kidney disease (i.e. early kidney disease, dialysis patients, transplant patients, etc.) and those with a representative mix of medical conditions (e.g. diabetes, heart disease, polycystic kidney disease). This is to ensure that the Patient Council reflects the diversity of the Canadian populations. Given the impact and importance of kidney disease in Indigenous populations, the PC will include representation from First Nations, Inuit and Métis peoples and also include geographical representation.. Indigenous members of the PC are also members of the IPERC. With the dual membership, these individuals will be the liaisons of the two councils to facilitate a collaborative and close working relationship with each other. (A table showing the diversity and breadth of PC members will be included in the future.) The PC will also leverage the connection with the KFOC at regional level to obtain members. Other than the Co-Chairs, all members of the PC will be part of a working group or research project team. When there is a vacancy in membership on the PC, a posting that outlines specific representation required will be made available to all patient partners of the Can-SOLVE CKD Network. When there is more than one interested individual applying for the position, the Executive Patient Council will select the most suitable candidate to join the PC based on established criteria. Co-Chairs The PC membership will vote to appoint three Co-Chairs (Note: each Co-Chair will take a lead for period of time dependent on schedules and health). The Co-Chairs will be of diverse background/ stage of kidney disease and include representation from the indigenous population. A Can- SOLVE CKD team lead as well as a representative of the KFOC will join the group as non-voting members to ensure progress and continued communication. Also, Can-SOLVE CKD Patient Engagement Liaison will assist with guidance and direction on topics needing to be addressed and accomplished by the PC. The Co-Chairs of the PC will become members of the Can-SOLVE CKD Steering Committee. The Steering Committee is comprised of researchers, patient partners, and members of the KFOC and Page 2 of 10

the Canadian Society of Nephrology (CSN). All Co-Chairs will be part of the PC Executive Committee. If a Co-Chair is to step down a call for nominations will be made from the PC and vote will be made. The goal for all members including Co-Chairs is to have a successor in mind and mentor them. Please see Appendix 1: Governance chart. Acknowledging that the workload of leading this PC can be quite significant, multiple Co-Chairs will enable a fair sharing of workload. Specific roles and responsibilities of each Co-Chair will be developed as the PC is fully formed. Executive Patient Council The Executive PC will be comprised of 8 (including 3 Co-Chairs) dedicated and self-appointed members of the PC, who have taken a leadership role in a working group or the IPERC. Some of the preferred qualities of the executive will include strength in communication and/or education, passionate about this process and have the availability. The Executive PC is to ensure that the mandate is executed in the various overarching areas. Members of the Executive PC will have the ability to provide a greater time commitment as they will carry the largest burden of work. Each executive will have an area of responsibility to oversee and report back on. The Executive PC will make sure that there is a succession plan for members for when they leave the executive council. When recruiting for the Executive PC, the Co-Chairs will learn the background of the PC members to determine people s skills and knowledge. The candidates will provide insight into their responsibilities as an executive member and see if they have the time to further commit. Can-SOLVE CKD Core Operations Team The Can-SOLVE CKD Core Operations Team will support and coordinate activities of the PC. The Core Operations Team will: help the PC Co-Chairs plan the meetings, organize teleconference calls, distribute materials and minutes, and provide administrative and other aid as required by members of the PC. Kidney Foundation of Canada (KFOC) A member of the KFOC will participate in all PC meetings and will provide appropriate support as needed. In addition, the KFOC will: Provide a conduit for the PC to connect with Branches (regional offices) and help grow the PC; Provide support for the eventual creation of Regional Patient Councils; Aid in knowledge transfer and dissemination to the kidney community (helping to promote the Network and highlight the successes and outcomes of the research projects); Aid in the creation of communication linkages with other members of the kidney community (patients, caregivers, researchers, etc.); Provide web-based support as requested and required; and Other activities to be determined in partnership with the patient partners Page 3 of 10

Canadian Society of Nephrology (CSN) The CSN will host an annual Can-SOLVE CKD meeting, allowing the PC to come together and network. CSN would be able to offer opportunities for Can-SOLVE CKD PC to present to kidney doctors in training from across Canada, providing a unique opportunity to share patient stories and influence the next generation of kidney doctors. CSN will enable ongoing interaction with its members including a standing invite to the CSN Annual General Meeting. Provincial/Regional Patient Councils In the future, if necessary, Provincial/ Regional Patient Councils may be created to ensure that Can-SOLVE CKD is sensitive to the different languages and ethno-cultural differences of patients in all parts of Canada. More details to be articulated by the PC, once fully established. Roles and Responsibility of the Patient Council Work on improving the understanding about the Can-SOLVE CKD Network among kidney patients and others Identify and establish local connections in partnership with the KFOC to build the network of patient partners for Can-SOLVE CKD Provide a strong patient voice in any working group/ committee or research group Ask questions in all areas they are involved to have a clear understanding on what is needed in kidney research. Make sure those involved provide the information in an understanding way Proposed Structure of the Patient Council Patient Council 25-30 Members 3 Co-Chairs, 4 Ex-Officio (Can-SOLVE CKD & KFOC) Working Groups: Members may choose to sit on one or more working groups, depending on available time and interests: - Research Projects & Recruitment - Knowledge Translation, Communications & Outreach Executive Patient Council 8 Members (includes 3 Co-Chairs) Page 4 of 10

Levels of Involvement & Time Commitment Required All levels of participation are encouraged and welcomed in the PC. It is understood that the level of involvement and the time commitment possible will vary between members, given the diversity among the PC members jobs, personal commitments, wellness and illness, and other supports. We anticipate that the workload for patients is about to 2-4 hours per week. However, members have the option to scale their commitment at any time. When a patient partner decides to change his/ her level of commitment, he/ she may inform the lead(s) of the research team(s) or working group(s) and the administrator. Terms of Reference, Patient Council The PC will meet once per month for one hour by teleconference or online technology. Note these meetings are most likely to take place during the day. A full-day, in-person meeting will take place at least once per year, budget permitting, in alignment with the CSN Annual General Meeting. PC members will sit for a term of 2 years (calendar years), with an option to renew for up to three more years. Membership renewal will be staggered to ensure that there are experienced members, as well as new members on the PC at all times. The PC will be supported by the Can-SOLVE CKD Core Operations Team (please see Appendix 1). Three Co-Chairs (male and female representation with a minimum of one Indigenous representative) will chair each meeting and will act as a conduit to the Executive PC and will be members of the Can-SOLVE CKD Steering Committee. Members of the Patient Council can be nominated for a Co-chair position. If more than one individual nominated for an opening, a vote will be held and the nominee with the greatest number of votes will be appointed. The Co-Chairs will sit for a term of two years, and their terms will be staggered for at least 6 months so that there is an experienced Chair present at all times. If a Co-Chair is to step down, a replacement will be voted in to replace the leaving Co-Chair. The Can-SOLVE CKD Core Operations Team will be responsible for taking minutes as a record of discussions and action steps, distributing minutes and other documents. The Can-SOLVE CKD Core Operations Team will also assist with screening new PC members. Each meeting will be audio-recorded and accessible to all members of the PC, in case someone is unable to attend the meeting. Minutes of each meeting will be shared with all members of the Can-SOLVE CKD Network. A written report will be prepared by the PC once per year (December). The role of each member of the PC will be to provide their feedback and input to the Network during teleconference calls and meetings. o Patients can provide expertise in wellness and health with respect to kidney disease, and in particular in 3 areas: experience of the progression of illness, experience with the health system (care delivery) and experience with specific treatments (drugs, surgeries). Given this vast lived experience, PC members will play an integral role ensuring that the Can-SOLVE CKD Network is sensitive to the needs and issues of patients. Page 5 of 10

PC members are expected to mentor and train new members replacing their specific roles in the Can-SOLVE CKD Network to ensure shadowing opportunities for the incoming members and outlining specific details to their roles. Mentorship may take the form of verbal and written instructions. The PC will explore options (i.e. methods and frequency) for communication between meetings of the PC and its working groups. This can take the form of social media, e-mails, newsletters etc. as deemed most appropriate and effective by the members of the PC and individual working groups. As the Network evolves, a number of Working Groups (or standing committees) will be established which will provide more focused work. Members of the PC will be encouraged to join as many working groups as time and interest allows. PC members will also be encouraged to sit on the other committees within the Can-SOLVE CKD Network. At least two patient partners, acting as equal voting members will sit on each committee (Please see Appendix 1 for list of committees). Working Groups The Working Groups (WG) will bring together patients along with the researchers, policy makers and other content experts to ensure that patient needs, values and requirements are maintained within the Can-SOLVE CKD Network in the relevant context. The (co-)leads of the working groups will be the patient liaisons between the working groups that they are leading and the respective committees for carrying out the specific works and/or the Can-SOLVE CKD Core Operations Team where applicable (Appendix 2); they are integral members of those committees and will commit to lead and guide in the respective committees that they are part of with the collective patient voices from the working groups. In addition, these WGs will perform important work that will help inform the future of patient engagement in research in Canada. The size of these working groups will vary depending on the functions and responsibilities of each group, which will be detailed with the inaugural PC. The following represents possible WGs, but should not be considered a final or exhaustive list (Note: All working groups will report back into the Executive PC or PC): Research Projects & Study Recruitment: This WG provides a forum to discuss and advance ways to increase meaningful involvement of patient partners in the research projects within the Network. Each project team will be represented by at least one patient lead within the team to participate in this WG. It is anticipated that this WG will work with researchers and other Patient Council members to organize patient partners and study participants for the research projects and to address other related requests on enhancing patient engagement from the Can-SOLVE CKD project teams. Knowledge Translation, Communications & Outreach: This WG will work with researchers, patients, kidney donors, policy-makers and funders that comprise the Can- SOLVE CKD Network to translate and disseminate the research results and outcomes from the Can-SOLVE CKD Network in meaningful and understandable ways for each of these unique audiences in the context of what has previously been studied in the topic areas. As part of this work, and with the support of the Can-SOLVE CKD core operations team, this WG will create a comprehensive communications and outreach strategy, including the development of a variety of communications materials, tools, and platforms (e.g. information briefs, website, social media etc.) to engage the wider patient community. From a knowledge translation perspective, the WG will review and provide feedback on the knowledge translation plans of each research project in Can-SOLVE CKD, and assist the Page 6 of 10

Knowledge User and Translation Committee in the creation of meaningful materials for distribution. By doing so, this WG will help researchers translate the outcomes of their research projects into tangible and measurable improvements in kidney health care that is clear for kidney patients and their families, kidney donors, policy-makers, funders and other stakeholders. Other WGs may develop as required. Remuneration In recognition for their time spent and valuable expertise, members of the PC will be remunerated for their participation and contribution. Remuneration will be provided for selected activities (e.g. annual workshop/meeting during the CSN) with substantial commitment (e.g. half or full day intervals). The remuneration will be provided at a set rate (e.g. $100-150/day of travel and meeting) in addition to travel and accommodation costs. Patient partners will have the option to not claim their honorarium or offer it for donation. Those with extraordinary financial circumstances are encouraged to discuss with the Core Operations Team for alternatives regarding remuneration. Opportunity for community at large to provide input to the Council Members of the PC will be ambassadors and champions by liaising with other community organizations and groups. They will bring back any relevant input to the PC. Members of the PC are welcome to bring in any idea and/or suggestion from the community at large for further discussion in specific working groups or broadly at the PC. Potential Outputs Increased research activities with results that are relevant and responsive to the needs of those living with kidney disease; Increased awareness and a change in culture for both patients and researchers regarding levels of engagement from patients; Potential positive impact on fundraising; Increased advocacy for access to research studies by patients to their care professionals and clinicians, and interest and enrollment in trials; A set of tools and programs which will be available on a national basis for patients to help understand the Network in specific and research in general. Can-SOLVE CKD and the PC adhere to the Guiding Principles set out by the Canadian Institutes of Health Research (CIHR) in the Strategy for Patient-Oriented Research s (SPOR) Patient Engagement Framework. 1 These are: Inclusiveness: Patient engagement fully integrates a diversity of patient perspectives; Support: Adequate support and flexibility are provided to patient participation to ensure that they can contribute fully to discussions and negotiations Mutual Respect: Researchers, practitioners, and patients acknowledge and value each other s expertise and experiential knowledge Co-Build: Patients, researchers, and practitioners work together from the beginning to identify problems and gaps, set priorities and work together to produce and implement solutions. Page 7 of 10

Reference 1. Canadian Institute of Health Research (2012). Strategy for Patient-Oriented Research: Patient Engagement Framework http://www.cihrirsc.gc.ca/e/documents/spor_framework-en.pdf ORIGINAL APPROVED: November 23, 2016 REVIEWED: July 11, 2017 REVISIONS APPROVED: October 4, 2017 Page 8 of 10

Appendix 1: Governance Structure of the Can-SOLVE CKD Network Page 9 of 10

Appendix 2: Patient Council Working Groups Page 10 of 10