Co‐building a training programme to facilitate patient, family and community partnership on research grants: A patient‐oriented research project

Abstract Introduction Patient engagement in patient‐oriented research (POR) is described as patients collaborating as active and equal research team members (patient research partners [PRPs]) on the health research projects and activities that matter to them. The Canadian Institutes of Health Research (CIHR), Canada's federal funding agency for health research, asks that patients be included as partners early, often and at as many stages of the health research process as possible. The objective of this POR project was to co‐build an interactive, hands‐on training programme that could support PRPs in understanding the processes, logistics and roles of CIHR grant funding applications. We also conducted a patient engagement evaluation, capturing the experiences of the PRPs in co‐building the training programme. Methods This multiphased POR study included a Working Group of seven PRPs with diverse health and health research experiences and two staff members from the Patient Engagement Team. Seven Working Group sessions were held over the 3‐month period from June to August 2021. The Working Group worked synchronously (meeting weekly online via Zoom) as well as asynchronously. A patient engagement evaluation was conducted after the conclusion of the Working Group sessions using a validated survey and semi‐structured interviews. Survey data were analysed descriptively and interview data were analysed thematically. Results The Working Group co‐built and co‐delivered the training programme about the CIHR grant application process for PRPs and researchers in five webinars and workshops. For the evaluation of patient engagement within the Working Group, five out of seven PRPs completed the survey and four participated in interviews. From the survey, most PRPs agreed/strongly agreed to having communication and supports to engage in the Working Group. The main themes identified from the interviews were working together‐communication and supports; motivations for joining and staying; challenges to contributing; and impact of the Working Group. Conclusion This training programme supports and builds capacity for PRPs to understand the grant application process and offers ways by which they can highlight the unique experience and contribution they can bring to each project. Our co‐build process presents an example and highlights the need for inclusive approaches, flexibility and individual thinking and application. Patient or Public Contribution The objective of this project was to identify the aspects of the CIHR grant funding application that were elemental to having PRPs join grant funding applications and subsequently funded projects, in more active and meaningful roles, and then to co‐build a training programme that could support PRPs to do so. We used the CIHR SPOR Patient Engagement Framework, and included time and trust, in our patient engagement approaches to building a mutually respectful and reciprocal co‐learning space. Our Working Group included seven PRPs who contributed to the development of a training programme. We suggest that our patient engagement and partnership approaches, or elements of, could serve as a useful resource for co‐building more PRP‐centred learning programmes and tools going forward.

From the survey, most PRPs agreed/strongly agreed to having communication and supports to engage in the Working Group. The main themes identified from the interviews were working together-communication and supports; motivations for joining and staying; challenges to contributing; and impact of the Working Group.
Conclusion: This training programme supports and builds capacity for PRPs to understand the grant application process and offers ways by which they can highlight the unique experience and contribution they can bring to each project. Our co-build process presents an example and highlights the need for inclusive approaches, flexibility and individual thinking and application.
Patient or Public Contribution: The objective of this project was to identify the aspects of the CIHR grant funding application that were elemental to having PRPs join grant funding applications and subsequently funded projects, in more active and meaningful roles, and then to co-build a training programme that could support PRPs to do so. We used the CIHR SPOR Patient Engagement Framework, and included time and trust, in our patient engagement approaches to building a mutually respectful and reciprocal co-learning space. Our Working Group included seven PRPs who contributed to the development of a training programme. We suggest that our patient engagement and partnership approaches, or elements of, could serve as a useful resource for co-building more PRP-centred learning programmes and tools going forward. condition, their caregivers, family members and friends, and this can also include members of a specific affected community. 1 Patient engagement in POR is described as patients collaborating as active and equal research team members (partners) on the health research projects and activities that matter to them. 1 To ensure that research results reflect patient, family and community priorities and that research results can be shared and implemented in ways most appropriate to end users, CIHR SPOR asks that patients be included as research team partners early, often and at as many stages of the health research cycle processes as possible. The early stages of engaging patients in research projects include research priority setting, project design and grant funding applications. 2 The Canadian Common CV (CCV)

was launched in 2002 by
Canada's Tri-Council research agencies. 3 The CCV is a web-based application supporting a standardised approach for researchers to enter their academic career-related curriculum vitae (CV) information such as education, publications and academic service. 3 This is required on Tri-Council grant funding applications including those submitted to CIHR. CIHR encourages patients to join health research teams on grant funding applications as Principal Co-Applicants, Co-Applicants, Collaborators or Knowledge Users, which requires patient research partners (PRPs) to complete specific requirements associated with those roles. Some of these requirements are acquiring a CIHR PIN #, completing the CCV, completing the Most Significant Contributions sections and writing a letter of support. 4 However, to date, there have been very little capacity-building opportunities to support PRPs during the grant application phase of a research study. Additionally, the process of obtaining a CCV has proven cumbersome and challenging for PRPs, specifically for those applicants without a traditional academic background. 5 In this way, the CCV requirement acts as a barrier to engage patients meaningfully in health research projects and activities, and therefore to conduct POR. To work around this veritable patient engagement barrier, members of the Patient Engagement Team responded to the clearly articulated need to support PRPs in understanding the CIHR grant funding application process and in completing the CCV application.
The objective of this POR project was to cobuild an interactive, hands-on training programme, with and by PRPs, a programme that could support PRPs in understanding the specific roles and processes of CIHR grant funding applications and for completing the CCV NIELSSEN ET AL. | 1585 application. In this paper, we use PRPs to refer to patients, families and community members engaged in health research projects. We also conducted a patient engagement evaluation, capturing the experiences of the PRPs in cobuilding the training programme.

| METHODS
This POR was a multiphased mixed-method study. The phases included: Phase 1: Engaged PRPs to cobuild materials, content and design format for delivery of the training programme. The study was guided by the SPOR Patient Engagement Framework, which identifies Inclusiveness, Support, Mutual Respect and Cobuild as the four guiding principles of patient engagement in POR. 1 In this section, we describe the novel patient engagement approaches used to achieve this objective. We also share the methods used for the patient engagement evaluation of the Working Group. Figure 1 provides an overview of the project from cobuild to evaluation.  To support PRPs in collaborating on the cobuilding of the training programme, the Patient Engagement Team followed best practices to identify, understand and implement PRP supports. Aftersome Working Group members had attempted and/or completed the CCV application process, we were able to: In September 2020, 3 staff members from CIHR SPOR and 11 CIHR staff members who specifically work with the CCV web-based application were contacted to obtain feedback on the content of the training programme in a 1-meeting.   Survey responses were collected and stored on the online Qualtrics platform. 8 Descriptive statistics (frequencies) were summarised for the quantitative responses and qualitative responses were summarised per section. Interviews were transcribed, anonymized and thematically analysed by two qualitative researchers using a mix of deductive and inductive coding strategies. The domains of the PPEET tool and CIHR Patient Engagement Framework informed the codes identified. 1 We followed the steps of thematic analysis outlined by Braun and Clarke. 9 Findings from the surveys and interviews were compared and summarised in descriptive tables. We used strategies to increase credibility, such as member checking (asking participants to clarify responses during the interviews). Member checking ensured that participants were given the opportunity to confirm their responses and support the accuracy of interpretation in data analysis. We also used peer debriefing between team members to discuss the feedback provided by PRPs of the Working Group and the main themes identified. Team member discussions about identified themes and supporting quotes helped to confirm whether the findings made sense and whether the themes accurately captured the associated quotes.

| RESULTS
Over  Figure 4 provides an overview of the workshops that have been delivered.
CIHR continues to be responsive to questions that have arisen over the 2 years that the workshops have been delivered.

| Evaluation of the working group
Of the seven PRPs of the Working Group, five completed the evaluation survey and four participated in one-on-one interviews.
Evaluation results from the PPEET survey are summarised in Table 1, and themes and subthemes identified from the interviews are summarised in Table 2. The findings from both the survey and interviews are also described and compared below. PRPs also highlighted some challenges, which included time management of the group (some members bringing up tangential topics) and the CCV being a new topic to some who were not familiar with the process. Scheduling of meetings was also mentioned by one member to be a barrier for them, as they worked full time and were unable to commit fully. Another PRP mentioned wanting to join the Working Group because they were frustrated by researchers reaching out to them at the last minute to be a part of grant applications, but providing no support to fulfil the requirements.

| Impact of the Working Group
On the topic of impact of the Working Group, four out of five PRP respondents in the survey agreed/strongly agreed that the group is achieving its stated objectives. There were mixed responses from PRPs of the Working Group on whether they were confident that CIHR took the feedback provided by the Working Group into consideration (three neutral, two agree), as well as whether the work of the Working Group makes a difference to the work of CIHR (two neutral, three strongly agree). One person answered neutral to some of the statements addressing the impact of their work as they   Challenges to contributing 'I wasn't able to contribute and participate as getting towards the end where they were bringing in people to help them assist in filling out the online information. That part I couldn't contribute to because I couldn't attend all the meetings'. (Patient Research Partner) 'Everyone there already had experience with the CCV. And for myself in the beginning, I was a little reluctant and more likely to ask questions than contribute or add to the meeting. I've never been too shy to ask questions and share my opinions. As I became more comfortable with the group, I started contributing and adding to the team'. (Patient Research Partner) 'worked together with some people getting stuck and the presenter trying to move them forward. And it's a delicate situation, right? Because you want to hear them out, but then you have to say, well, hang on, we've gotta get to the next step and some people have very strong personalities and they knew that if they continued to just talk and talk and talk. They would get more time to talk and others would sit back and go.

| WHAT WE KNOW
PRPs are increasingly being included in health research activities beyond health research projects. This includes involvement in reviews, 10 as co-authors on publications 11,12 and in the co-building of educational tools. 13 Training for public and patient involvement (patient engagement) should be co-produced with patients. 13 The four CIHR SPOR PE Framework guiding principles aligned with the objective and focus of the Working Group and provided the blueprint for working together. 1 These are detailed and their alignment is explained below.

| Inclusiveness
Diversity in research teams and research projects can lead to more universally appropriate and applicable research results. [14][15][16]

| Co-build
Co-build is defined by CIHR SPOR as patients, researchers and practitioners working together from the beginning to identify problems, gaps in knowledge, to set priorities for research and to work together to produce and implement solutions. 1

| STRENGTHS AND LIMITATIONS
A strength of this work is the POR design that engages patients as active partners in the co-building of a training programme that ultimately became useful for PRPs and even clinician-researchers. We aimed to adhere to the CIHR guiding principles for patient engagement (inclusiveness, support, mutual respect, co-build). A strength of this work is evaluating our patient engagement process by conducting surveys and interviews with our PRPs of the Working Group. The evaluation of the partnerships showed that our process was seen as meaningful to PRPs and that they felt their contribution and collaboration contributed to a more PRP-friendly and usable approach to a barrier to engagement. Our paper demonstrates approaches that can identify and inform more patient partner-centred cobuild projects and activities; how to work and learn together; and processes to break down research process to identify PRP aspects and then collaboratively identify barriers and how to overcome them. Final approval of the version to be submitted: All authors.