Introduction
A decade ago, the inclusion of patients and caregivers as partners in shaping health research and health-care delivery was novel and fraught with uncertainty. Patients had little input into research priorities and their involvement in research was limited to participation as research subjects in clinical trials. In 2025, the merits of patient-oriented research (POR) are increasingly understood, and the concept is more widely accepted and practiced. Multiple funding agencies now require the inclusion of patient perspectives in grant applications both in Canada and internationally, and there are increased efforts to engage patients in setting research priorities across disciplines. Incorporating patients as co-investigators on research teams ensures that research and approaches to care overtly align with patient priorities [1].
In 2010, after consultations with stakeholders, the Canadian Institutes of Health Research (CIHR) developed a strategy for patient-oriented research (SPOR). The overarching goal of SPOR was to accelerate the incorporation of research findings into practice to improve health-care outcomes. Central to this goal was the creation of POR networks with a focus on chronic diseases. The CIHR funded five chronic disease networks in Canada under the SPOR Program, including Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) [2]. To date, Can-SOLVE CKD has funded and facilitated 27 research projects focussed on kidney health and disease across Canada. In this editorial, co-authored with four Can-SOLVE CKD patient partners, we discuss the successes, challenges, and future opportunities for patient engagement within the context of a national research network.
Background
Since its inception in 2016, Can-SOLVE CKD has included patient partners with lived experience with kidney disease into all aspects of the network; the governance chart shown in Figure 1 illustrates the extent to which Can-SOLVE CKD has embedded patient partners into the research network. This organizational structure, combined with our core values of inclusion, cultural competency and collaboration, have led to truly integrated patient engagement. Initial Can-SOLVE CKD research priorities were all based on priorities raised by patients with kidney disease and policy-makers from across Canada [3, 4].
We highlight the consistency and commitment required to bring patient voices to shape research activities. Dedicated patient partner councils provide guidance on all aspects of the network, and patients act as co-chairs on research projects, committees, and the leadership team. In addition, the network offers training, support, and funding for all patient partners. The environment, including the philosophy, policies, and values, has been co-developed with patient partners. The network’s goals include building sustainable infrastructure to support growth and culture shifts in the research landscape.
Two dedicated patient partner councils, formed at the initiation of Can-SOLVE CKD, are patient-led with support from network staff: the Patient Governance Circle (PGC) and the Indigenous Peoples’ Engagement and Research Council (IPERC). Indigenous people in Canada are three-times more likely to be affected by CKD than the general population [5]. IPERC ensures the network’s research is culturally relevant and conducted in a manner that upholds cultural safety principles.
Both PGC and IPERC are composed of diverse individuals (e.g., in age, socio-economic status, sex, gender, and cultural backgrounds) from across Canada (rural and urban) with a varied range of lived experience (e.g., CKD patients, caregivers, people with transplants, and on dialysis). These patient councils are at the heart of the network and provide oversight and guidance; they are mandated to ensure that the patient perspective informs every aspect of the network, including research, governance, peer review, and capacity building.
“The patients and patient families of [IPERC and PGC]… are driving this organization, and the work that we’re doing. They’re identifying what we need, where we need to go, where the effort needs to be put. That’s what’s really unique about Can-SOLVE CKD.” [T.A., Patient Partner, PGC member].
Many members of IPERC and PGC are engaged in several roles, as integral committee members in Can-SOLVE CKD and in other organizations such as the Canadian Nephrology Trials Network and Kidney Foundation of Canada.
Findings and Discussion
To explore the key aspects of Can-SOLVE CKD that contribute to a successful POR program, network members convened for a roundtable discussion to share perspectives in 2024. Participants included 4 network staff members from the central operating team and 4 patient partners representing PGC and IPERC. Discussions were transcribed verbatim to identify common themes. Three key factors for POR success, as described by patient partners, are: (i) a commitment by leadership to POR; (ii) a strong focus on relationship-building; and (iii) supporting a culture shift in research that embraces a patient-centered approach. Recognizing the lack of formal POR training at the inception of the network, the team developed dedicated relevant training tools. This need and importance of formal patient engagement training has been recognized by other successful networks, as has the commitment to building trust over time [6, 7]. Inclusiveness, support, mutual respect, and co-building are also highlighted as necessary values for achieving meaningful POR [7] and are the core values of our network.
Important Drivers of Success
Leadership and Commitment to POR
The principal investigators and researchers have a strong commitment to POR, an essential contributor to the success of the network. This commitment is authentic and highly valued by patient partners. At the first network meeting, patient partners were seated in the front row and encouraged to contribute to discussions and presentations. Patient partners felt that the researchers not only listened to their input, but heard them. The commitment by leadership to actively engage in real POR, “in a good way,” has been unwavering and has set the tone for the whole research network.
“Some of the researchers, they knew they needed to improve patient care and research, and that patient-oriented research was the way to go. But had it not been for that buy-in at a senior level, none of this would have taken place.” [C.W., Patient Partner, IPERC Co-Chair, PGC member, Leadership Team].
Time Commitment to Building Relationships
Another key factor to the success of the network’s POR program is building open and honest relationships. While willingness to listen and learn is a critical first step, many patient partners describe how building relationships takes time, trust, and honesty. This is especially true when engaging Indigenous peoples and other racially marginalized and/or gender-diverse communities.
“For me, it was definitely the building of relationships over time. The more you got to know people, you start to build trust with people, the more likely you are to tell your story… This was a place where, for the first time, I felt I did not have that mask on and was able to just be totally real with all the people within the network.” [A.D., Patient Partner, IPERC co-chair, PGC Executive Co-chair].
Patient partners who have been with the network the longest noted that the process of relationship-building took several years of working together. Newer patient partners sensed the established openness and honesty and quickly felt comfortable interacting with other members. This contributed to greater sharing of stories and insights, enriching the network at large and furthering our mission.
“There’s a willingness to sit through the discomfort of certain things, and I think that’s part of the relationship building. There’s a real honesty within the network.” [K.L., Patient Partner, PGC member].
Embracing Culture Change in Research to Include Patients
A strong commitment to POR, fostering trust, and building relationships led to a shift in our collective approach in the ways patient partners interact with researchers. Increasingly, when researchers formulated new ideas, they sought to consult the PGC and IPERC for input and guidance. Patient partner’s willingness to contribute their time is highly valued and researchers recognize the importance of their unique insights and perspectives. Within the network, the power and value of the patient’s voice is genuinely understood and embraced.
“When we talk about what we do as a network… We put [culture change] on an equal plane with the research itself… and I think that is so important. It’s about the process and the community that we’ve created as much as the [research] projects” [G.P., Can-SOLVE CKD Communications & External Relations Lead].
Responding to Challenges
Capacity-Building and Training to Support POR
The formal structures established prioritized the development and training of both researchers and patients in POR. Thus, several tools and processes were created. As one patient partner describes, “we were building the plane while we were flying it.”
The network established a committee consisting of patient partners and researchers to co-create relevant tools and training courses. These courses are freely available, widely accessed, and used within and beyond the network. Table 1 describes the relevant tools and training courses, and the number of times the courses have been accessed by downloads.
Relevant training courses and their purpose
| Training course title | Purpose of training | Downloads, n |
|---|---|---|
| KidneyPRO [8] | Introductory information on kidney research | 533 |
| Patient Engagement Toolkit [9] | Information and tips to engage in POR | 589 |
| Indigenous Learning Pathway [10] | Cultural competency resources supporting indigenous ways of knowing | 4,116 |
| Implementation Toolkit [11, 12] | Best practices for implementing research into practice | 61 |
| Training course title | Purpose of training | Downloads, n |
|---|---|---|
| KidneyPRO [8] | Introductory information on kidney research | 533 |
| Patient Engagement Toolkit [9] | Information and tips to engage in POR | 589 |
| Indigenous Learning Pathway [10] | Cultural competency resources supporting indigenous ways of knowing | 4,116 |
| Implementation Toolkit [11, 12] | Best practices for implementing research into practice | 61 |
Along with the development of POR training tools, we recognized that engaging patients in open dialogue, ongoing evaluation exercises, and annual project reviews were critical allowing for responses to issues and challenges.
Financial Support
Transparency of funding to these activities is essential to support meaningful engagement; patient partners are fairly compensated for their contributions in ways that ensure accessibility, equity and inclusion. Can-SOLVE CKD dedicates funds for in-person meetings, honoraria, and personal assistance during travel, including supporting travel dialysis. In-person meetings were recognized by patient partners and researchers alike for playing a critical role in knowledge sharing and the building of trust and relationships. The network developed a compensation policy for the time patient partners spend attending meetings, reviewing documents, providing feedback and input, and contributing in other meaningful ways to research and network activities. Compensation and honoraria are an important indication to patient partners that their time and participation is valued and appreciated. Many patient partners use their personal vacation days to attend meetings, further emphasizing the importance of a fair and equitable compensation policy. The policies were developed with patients, and form the basis of official policies for national programs [13].
What Will the Future Bring?
The importance of kidney disease is increasingly recognized by health-care systems, policy-makers, and researchers, thus leading to rapid changes in the landscape of kidney care and research. Rapid innovation in treatments and new strategies to modify the course of CKD make it an exciting time in nephrology. Embedded in this landscape of change is the true integration of patient perspectives and voices in shaping research activities. Future opportunities for POR rest on an understanding of the importance of deeper and wider engagement of all supported by ongoing relationship-building.
The foundation is well laid, and many successes, reflections, adaptations, and knowledge-sharing activities have contributed to this better understanding. As we continue to support and develop POR, we see new opportunities, such as leveraging the expertise of patient partners broadly beyond our network as co-leaders in the kidney research community. Can-SOLVE CKD seeks to broaden connections and collaborations with external research networks and establish a community of patient partner peer reviewers. Engaging patient voices in conversations with policy-makers and funders based on skills developed and honed within the objective and supportive milieu of research will be critical to implementation. In line with this, many patient partners of Can-SOLVE CKD have attended and participated in national and international conferences, consensus meetings and roundtable discussions with organizations such as the International Society of Nephrology and the Kidney Precision Medicine Project. We continue to involve patient partners in knowledge dissemination activities, through writing and publishing manuscripts, and delivering presentations. We are co-creating patient partner recruitment tools; performing an inclusion, diversity, equity, and accessibility audit to determine where we can improve; and supporting Indigenous cultural competency within and beyond the network.
Conclusion
Patient engagement not only shapes health research positively but also changes the way researchers and clinicians approach the practice of medicine and science [14]. By putting patients first, genuinely listening, engaging meaningfully, and investing the time to build trust and relationships, we are changing the landscape and culture of research to ensure it is relevant and applicable to those for whom it matters most; as such, patient partners play a pivotal role in changing research paradigms.
Conflict of Interest Statement
The authors have no conflicts of interest to declare.
Funding Sources
The study was funded by the Canadian Institutes of Health Research – Strategy for Patient-Oriented Research.
Author Contributions
Conception and design: A.L., K.L., A.D., C.W., T.A., G.P., and M.D.T. Acquisition, analysis, and interpretation and drafting of the work: M.D.T. and M.H. Reviewing and final approval: A.L., J.J., G.P., M.T.J., J.W.S., A.D., K.L., T.A., C.W., B.J.M., M.D.T., and M.H.
