Preparing the next generation of health researchers by embedding public and patient engagement into Canadian graduate education: reflections from graduate students

Abstract

Public and Patient Engagement (PPE) in health research has become an established practice and is increasingly now an imperative for publicly funded health research grants. Graduate students represent the next generation of health researchers; therefore, it is essential they gain PPE knowledge and skills within academic landscapes that promote collaborative research with those whom research is intended to benefit. By securing theoretical knowledge and practical experience early in their research careers, effective PPE can become well-established in all academic, health research and healthcare domains. However, many academic institutions struggle with implementing the necessary systemic and cultural change to moving the science and practice of PPE forward within their institutions. Nine students enrolled in a graduate level PPE course at the University of Calgary, Alberta, Canada engaged in an end-of-term reflexive class exercise that centred on the question “What would make patient engagement more possible for graduate students during their graduate degrees?” As a result of iterative review and discussion of the responses, four key themes were identified: (i) embed PPE elements into health research graduate program structure, (ii) offer opportunities to support hands-on learning and practice of PPE, (iii) integrate public, patient, and community members into graduate program design and delivery, and (iv) emphasize ethical community-based research considerations and researcher reflexivity. For health science graduate students to inclusively integrate PPE theory and principles into their research work, it is important that the academic institutions they are enrolled in keep pace with current research imperatives, and ethical and funding practices. This means regularly assessing and evaluating ways their institutional systems, processes, and programs are responding and evolving. In this reflective commentary we offer our considerations, and suggested guidance on best practices to continue to ‘move the needle’ on embedding PPE culture and practice in academic institutions in Canada and globally. We hope to initiate response and further discourse from other graduate students and from patient partners who have shared their lived experience insights to graduate student research studies, and mentorship and governance roles in health science graduate level curriculum and program planning.

Plain language summary

It is important to include people whom health research is supposed to benefit in deciding what should be researched and how research should be carried out and put into practice. Organizations that fund public health research, such as the Canadian Institutes of Health Research (CIHR), now make it essential that research teams include patient and community research partners in the research studies they fund. Graduate students are students who have completed an undergraduate degree and are working to obtain Master or Doctorate degrees. Completing these degrees often includes a comprehensive research project. This project provides an opportunity for them to get real-world experience working with patient and community members to ensure their projects are relevant to what matters to people and to learn how respectfully and inclusively work with patient and community members. Academic institutions, like universities, are often slow to keep up with this evolving idea and practice. Nine students from a University of Calgary graduate course about Public and Patient Engagement (PPE) in health research, collectively with their three course instructors, wrote this commentary to help universities, researchers, and patient and community members to start and keep discussions going about how to best do this. We hope to inspire all universities to embed PPE in their graduate studies programs and courses. We also hope to initiate further discussion, including from patient partners who have shared their lived experience insights to graduate student research studies, mentorship and governance roles in health science graduate programs and curriculums and other students.

Background

In Europe, Public and Patient Involvement (PPI) describes a participatory research approach where patient and public members collaborate throughout the research cycle, from conception through to dissemination, implementation and evaluation, beyond the role of research participants contributing study data [1–3]. Ample evidence demonstrates that involving patient and community members in the research that directly impacts them ensures both processes and outputs are more relevant, inclusive, and accessible to the diverse populations the research is intended to benefit [3–5]. Thus, PPI is foundational to many European public health and social care research funded organizations such as the United Kingdom National Institute for Health Care and Research (NIHR), Ireland Public and Patient Involvement Ignite Network (PPI Ignite), the European Patients’ Academy on Therapeutic Innovation (EUPATI), and in Nordic countries such as health research funders in Denmark [6]. In North America the term ‘patient engagement’ is used to describe this approach that has become requisite to research supported by the Patient-Centred Outcomes Research Institute (PCORI) in the United States and the Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (CIHR SPOR) in Canada. In keeping with the Canadian context of the student team, Public and Patient Engagement (PPE) will be used in this commentary and understood to be synonymous with the European definitions of PPI.

The inclusion of public and patient research partners into academic and clinical health research teams continues to evoke ethical concerns and practical considerations. To continue the shift to more collaborative research ecologies, it is important that researchers develop competencies and confidence to meaningfully include public and patient members in their research activities and studies, especially those from populations and communities traditionally missed and missing from health research [1]. There is growing evidence in the literature that encourages academic, clinician, community and healthcare organization researchers to more inclusively engage public and patient members in their research activities, and multiple training modules and programs now exist to support public and patient partners to engage more equitably and effectively in health research [7–9]. Graduate students (Master and Doctorate) represent a distinct researcher perspective and as such, have unique considerations and challenges in applying theoretical and methodological approaches to PPE in their academic work. One study that looked at the integration of PPE across a doctoral research cycle described limited research knowledge, skills and experience, limited funding and time, and lack of supervisor understanding and knowledge of PPE as PPE challenges faced by doctoral students [10]. Another identified further challenges related to potential perceived and real power imbalances between patient partners, students, and supervisors, and in addressing emotional and cultural sensitivities particularly with pediatric, palliative and more vulnerable and marginalized populations [11]. Additional institutional challenges that might restrict PPE attempts can result from different definitions and levels of understanding within research ethics boards of patient partnership versus participation in health research, institutional restrictions on patient partner compensation and practical challenges to integrated knowledge translation and dissemination, including co-authorship [5, 12–14].

At the University of Calgary, Cumming School of Medicine, Alberta, Canada, the Department of Community Health Sciences has offered the online MDCH 700 Public and Patient Engagement in Health Research course [15] to Master or Doctorate students in any health-related discipline for each Fall semester from 2021 to 2025. The University of Calgary is a member of the Western Dean’s Agreement [16] so students from affiliated universities in Western Canada can complete MDCH 700 for credit at their home institution. The course provides a theoretical overview of patient and community engaged health research, an introduction to theory and practice of the patient-oriented research (POR) [17]; global conceptualizations and language around PPE; roles, opportunities, training, support and compensation for patient and community research partners; Indigenous engagement and research methodologies; ethics; evaluation of engagement; and knowledge mobilization with patient partners including co-authorship. The course also includes guest speaker presentations, reflexive class discussions and assignments on engaging patient and community members in health research studies.

We are aware of other PPE theory and praxis based graduate courses being offered nationally and globally including Faculty of Medicine 6268 (MED 6268), Patient Engagement in Health Research, Memorial University, Newfoundland, Canada [18], Health Policy Management and Evaluation 5012 H (HAD5012H), Patient and Caregiver Engagement in Research University of Toronto, Ontario, Canada [19], Denmark’s Aarhus University, Graduate School of Health (P264/08), Public and Patient Involvement in Health Research [20] and of an intentional study that embedded and evaluated a structured PPE training program in a health-related doctoral program at a university in Ireland [21]. Yet, despite the evidence supporting the value and positive impact of PPE in graduate student research [22–25], medicine development [26] and medical school training [27], there exists little guidance about ways post-secondary institutions can instill a PPE ethos and culture in health science graduate study programs, both Master and PhD, aside from a recent publication centred in the United Kingdom [11].

Description of reflexive group exercise that led to this viewpoint article

During the second to final Fall 2025 MDCH 700 class, all nine students and three course instructors participated in an in-class reflexive exercise based on the following question, “What would make patient engagement more possible for graduate students during their graduate degrees?” The students had ten minutes to individually reflect, based on their learning and experiences during the class, on how they felt academic institutions can better support PPE in health science graduate student curriculum and work. Students entered their responses into a virtual Zoom whiteboard set up and managed by one of the course instructors. The responses were visible to all and were collectively discussed among the students and instructors. Responses that were similar were integrated and then grouped to align with broader categories. Following iterative rounds of discussion and re-grouping, the categories were refined until all course students and instructors reached agreement on four main themes. Course instructors took notes on the additional ideas and suggestions shared by the students and recorded the final themes.

In the final class, students were randomly assigned into three teams of two and one team of three students. Each team selected a specific theme to elaborate on. Teams had 20 min in break-out rooms to write bullet point considerations and recommendations for their assigned theme. These were collectively reviewed and reworked as a class group, with the other students and course instructors adding feedback and insights as well. In the two weeks following the course, the teams met individually on their own time and revised the bullet point content into manuscript style text which was shared with the course instructors and compiled for this manuscript. The four themed recommendations that emerged from this structured reflection exercise are summarized below. Recognizing the variety of disciplines encapsulated within health sciences, these themed recommendations aim to support increasing graduate student knowledge and application of PPE in ways that can be flexible, and tailored to align with unique program requirements, research fields, and student timelines.

Embed PPE elements into health sciences graduate program structure

Incorporating PPE elements in health sciences graduate programs can help support students to connect their academic work and scholarship to real-world patient and community needs, preparing them for more fulsome approaches in academic, organizational, scientific, or medical careers. Graduate programs could include PPE expectations in supervisory committee checklists to prompt graduate supervisors and committee members to discuss engagement plans regularly with graduate students. This can help ensure accountability in the research process and improve relevance, rigour and quality of the patient and community-based graduate work.

It is important to prompt students to think about PPE while their thesis study proposals are being formalized to avoid late-stage, sometimes tokenistic engagement to meet program or publication requirements. To support a stronger PPE culture in graduate programs, it would be essential to broaden reach and try to engage a scope of students beyond those who have a pre-existing interest or specific program requirement to fill. We recommend academic institutions encourage every health science graduate student to integrate PPE in at least one phase of their research project. PPE in early phases of graduate study development can ensure questions, language and study design are appropriate and patient and community centred and relevant, while PPE in the dissemination phases can help ensure research outputs are more inclusive and accessible to all patient and community populations [11]. In more bench science and clinical trial work, students might consider collaborating with patient partners to write more inclusive and accessible plain language study backgrounds and patient facing educational materials, consent to participate forms or data collection tools such as surveys. Connecting directly with the end-users and benefactors of their research in early phases can help students connect with the real-world impact of their work [27].

Because PPE is taught as both a theoretical approach and methodology, academic institutions should consider offering a dedicated graduate level PPE course, either as a mandatory component or elective option, within health science graduate programs. This course should provide foundational theory and knowledge about effective collaboration with patient and community partners and equip students with essential skills to identify research priorities based on lived experience perspective rather than primarily academic or clinician-driven research agendas. An optional practicum-based component could further enhance learning by giving students hands-on opportunities to collaborate with patient and community advisors, partners, and organizations. Such experiential learning could foster reciprocal understanding, helping to bridge the gap between academic and community, and theory and real-world priorities and applications.

Offer opportunities to support hands-on learning and practice of PPE

Exposure to and integration of PPE at the graduate level cannot follow a one-size-fits-all approach. Providing multiple and mandatory opportunities for learning and applying PPE concepts is essential for students to effectively learn, experience, and contribute to evidence beyond the classroom. Examples of potential requirements can include patient research partner and researcher dyad presentations, guest lectures related to integrating patient-oriented research and community engagement into research design, and mandatory student attendance to patient and community events.

Peer mentorship (both formal and informal) can promote more comprehensive integration of theoretical knowledge of PPE into the context of the student’s work and facilitate deeper learning across programs and disciplines. Formal peer mentorship programs could enhance learning and opportunity to apply PPE concepts in practice. Pairing a student with a mentor equips the mentee with practical knowledge on how to implement PPE in the graduate program context and provides an opportunity for the mentor to gain student training experience and additional PPE insights. Mentorship programs could be further strengthened by accepting students across departments to facilitate transdisciplinary training. PPE networking events or workshops could allow students to connect broadly and share ideas on PPE integration into student research.

Informal peer mentorship can happen with intentional course design. For example, MDCH 700 lectures introduced foundational concepts that were then further explored through student presentations, group discussions, and collaborative activities. The practices could be transferable to larger classes where consistency in composition of smaller student discussion groups could help facilitate trust and establish a safe environment for co-learning.

Patient insights and perspective have proven valuable to PPE mentorship activities and workshops, enhancing research, PhD student personal and professional development, and fostering ongoing relationships between researchers and patient communities [28]. Fostering a graduate student network or community of practice across the established CIHR SPOR SUPPORT Units [29], CIHR SPOR Chronic Disease Networks [30], and the CIHR SPOR Evidence Alliance [31] could provide a space for students to discuss their projects outside of their immediate institutional contexts, foster broader national peer and academic mentorship connections, while connecting students to the multitude of resources and supports they offer.

Attempts should also be made to promote funding opportunities that support PPE and to foster relationships and coordinate presentations and webinars with grant funding organizations and networks. Similar to the CIHR Gender-based Analysis Plus (GBA+) [32] guidance considerations, this could help prompt student applicants to more intentionally reflect on how PPE can be integrated into their work, and potentially help increase PPE dialogue between students, their supervisors, and academic institutions.

Integrate public, patient, and community members into graduate program design and delivery

It is important for students to have opportunities to connect with, form relationships with, and learn from patient and community research partners who represent a diversity of health research and lived and disease related backgrounds. Reminders of the purpose and real-work impact of health research through conversations with people with lived experience (PWLE) can help shape thoughtful practices. Inviting patient partners to attend graduate research and medical education classes and learning sessions, as well as to collaborate on student research studies are essential first steps to bringing real world perspective and priority to student work. It is important that academic institutions work to establish ongoing relationships with patient and community organizations, patient research partner training organizations such as Patient and Community Engagement Research (PaCER) [33] and the Family Engagement in Research (FER) program [34]. Learning from patient engagement research training programs graduates, such as PaCER [33] and FER [34] programs, could increase trainee knowledge of the research experience and skills these graduates possess, and how their inclusion as research team members supports meaningful and more comprehensive research outcomes.

And finally, engaging members from specific affected communities has been shown to reduce stigma and enhance safety in research studies, especially for more marginalized populations who are seldom included in the research aimed to benefit them [27]. Programs might consider expanding the role of patient and community members in governance such as including on institutional research ethics boards, on graduate program supervisory committees, and including patient partners in medical school training to help bridge the ‘bench to bedside’ evidence gap. The engagement of patient and community partners lived experience perspectives and insights would strengthen the committee’s perspective and enrich processes.

Emphasize ethical community-based research considerations and researcher reflexivity

It is important that students are motivated to engage with the communities that their research aims to benefit. This helps ensure projects are embedded in community aims and priorities rather than academic self-interest. Relational and ethical considerations of patient and community health research may become muddled to students already immersed in intrinsically challenging coursework and research. Because many graduate student projects focus on more marginalized, and less often included communities and populations it is imperative to offer resources, supports and regular reminders of the ethical foundations of good patient and community research.

PPE challenges ongoing reflexivity about researcher positionality and bias [35]. It is important for graduate students to understand positionality and whether they are part of their community of focus. If so, they should reflect on where they fit in and how they are situated in the work, is the motivation personal interest or experience? Students need to think beyond “do no harm” to doing good. This entails understanding and recognizing positionality, privileges and potential researcher bias throughout the research process and how community direction and guidance can inhibit perpetuating stereotypes and avert any possible harms to the communities the research claims to serve.

Students should not be discouraged from working with specific communities, but rather should be made accountable by seeking to address epistemic and other potential power imbalances and hierarchies, especially those instilled in the ethos of academics that direct giving information to community instead of research driven by community. Foundational to breaking myths and stereotypes about capacity and capability of meaningful engagement of patient and community members in research is to pay attention to language and potential interpretations of language. For example, patient engagement means different things to different people. This was exemplified by other students in the class who shared that prior to joining the class they thought patient engagement meant treating patients nicer.

Students must also move away from antiquated concepts of ownership of knowledge and move toward more co-learning and co-developed common knowledge resources. Important to this is understanding differences and bridging similarities in research teams and studies. Making time and space for building research relationships based in mutual trust helps us to understand our biases and humanizes the diverse lived and living experiences of patient and community members. This can mean exploring and encouraging where community research relationships can continue to be built from existing trusted networks and organizations. This can also reduce time. Understanding how individual and collective past experiences can provide better health research ecologies will infinitely improve research evidence and health care implementation outcomes.

Limitations

This commentary is not without limitations. These considerations and recommendations are informed by graduate student reflections, not empirical evidence therefore should not be interpreted as formal qualitative research. The class who participated in this reflexive exercise was relatively small, nine students, all but one of whom are based in Calgary, Canada. As such, could not be a representation diversity of academic institutions or research disciplines across Canada.

While patient partners have been invited to present in previous offerings of the MDCH 700 class, this was not possible in this year. Therefore, this commentary is without insights, reflections or review from patient partners. We feel strongly academic institutions should leverage relationships with existing patient partners affiliated with research teams at their institutions, and patient and community organizations, to collaboratively explore implementing these recommendations in a way that aligns with the unique needs and priorities of each. Because the insights from patient partners about involvement in graduate study research and mentorship opportunities, and in governance level roles in graduate level programs is missing, the authors would welcome a response from patient partners who have engaged in these novel areas.

Conclusion

We hope this commentary will help provoke awareness of the ongoing need and real benefits of PPE training and support for health sciences graduate students in post-secondary institutions. As the next generation of researchers, graduate students represent a unique researcher population, well positioned to accelerate the embedding of PPE into health research and healthcare organizations going forward. It is essential they are offered appropriate opportunity to gain theoretical knowledge and skills in practical application of PPE in spaces where learning can be openly discussed and evolved. Embedding mechanisms and support for PPE awareness and experiential based co-learning early in graduate programs, coupled with institutional support in ethical guidance and processes related to best practices in inclusive and collaborative research, is essential to moving the wheel on the science and practice of PPE going forward. We hope for a response from patient partners about their experiences working on graduate studies, mentorship activities, and program and curriculum development, and to inspire other health sciences graduate students to publish on ways they integrated PPE into their research work, particularly their successes, challenges, and reflections.

Abbreviations

CIHR SPOR

Canadian Institutes of Health Research, Strategy for Patient-Oriented Research

CIHR SPOR SUPPORT UNIT

Canadian Institutes of Health Research, Strategy for Patient-Oriented Research, Support for People and Patient-Oriented Research and Trials, Units

CIHR SPOR

Networks: Canadian Institutes of Health Research, Strategy for Patient-Oriented Research Networks

EUPATI

European Patients Academy on Therapeutic Innovation

FER

Family Engagement in Research

NIHR

National Institute for Health and Care Research

POR

Patient-oriented Research

PaCER

Patient and Community Engagement Research

PPE

Public and Patient Engagement

PPI

Public and Patient Involvement

PPI Ignite

Public and Patient Involvement Ignite Network

Author contributions

All the authors (IN, HD, RK, MA, IW, AA, JE, ED, IL, ME, PF, and MS) contributed to the conceptualization of the commentary, and writing, reviewing, and approval of the submitted version. All authors read and approved the final manuscript.

Funding

This work was led by the Alberta SPOR SUPPORT Unit (AbSPORU), which is co-funded by the Strategy for Patient-Oriented Research program of the Canadian Institutes of Health Research (CIHR), Alberta Innovates, and the University Hospital Foundation, with in-kind support from its implementation partners the University of Alberta and the University of Calgary.

Data availability

No datasets were generated or analysed during the current study.

Declarations

Ethics approval and consent to participate

Not applicable.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.