This training opportunity was designed to be informative and constructive for trainees regardless of their eligibility or the success of their application (see Table 1 for key components of the fellowship). For example, before they apply, interested trainees must participate in a one-on-one consultation meeting to help develop their partnership plan. These consultations provide applicants with the opportunity to brainstorm various ways they can involve experts by experience in their research. Approaches discussed vary based on the stage of the project, the research question and methods, and the population most affected. Recommended partnership activities may include, but are not limited to, partners being involved in data collection (e.g., peer interviewers), the creation of an advisory committee, a community consultation event to inform the research question, and/or the recruitment of co-investigators with lived experience. Strategic advice offered to applicants can include frank discussions of potential challenges and the feasibility of various timelines. In addition, all trainees (whether their application is successful or not) receive written feedback on their applications, including constructive feedback from older adult and caregiver partners. All applicants are offered the opportunity to have a one-on-one meeting with the Managing Director of the Collaborative to discuss their feedback, potential next steps, and ask general questions about partnering in research.
Successful trainees are awarded $1500 CAD to support their work in engaging people with relevant lived experience in their research. After meeting with the Managing Director to discuss the reviewer feedback, trainees are provided with materials to support their planning, execution, and follow-up of meetings or activities with people with lived experience. For each fellowship trainee, we organize a meeting with the Collaborative older adult and caregiver partner team for the trainees to present their research and revised engagement plan (based on the reviewer feedback) for discussion and further guidance. Trainees identify goals for the meeting and relevant questions for the older adult and caregiver partner team, which vary according to the trainee’s project and timeline. For example, one trainee sought feedback on their community advisory committee recruitment materials, another had questions about her plan for onboarding new partners (with lived experience). In addition to providing trainees with further feedback and advice on their engagement plans, these meetings offer a supported opportunity to facilitate a meeting with older adults and practice communicating about their research in accessible ways. After the meetings, Collaborative partners anonymously submit feedback and suggestions for the trainees specific to their communication and facilitation of the meeting.
Over the remaining six to 18 months of their fellowship, trainees implement their engagement plans, identifying and working with people with relevant lived experience to advise on their ongoing research. Fellowship trainees meet as a group three times per year to discuss their successes and challenges and share relevant information and resources. Every six months they are required to submit an activity report. We created these reports to encourage reflection, support the advancement of trainees’ engagement efforts, and assess the program’s effectiveness. They also provide important information to refine and enhance the program. In addition to reporting on the engagement activities conducted, trainees are asked their greatest challenges and most valuable learning, to reflect on their successes and challenges related to the equity, diversity and inclusion of their engagement activities, the impact of the fellowship, and their recommendations for improvement. Fellowship trainees are also encouraged to engage in other Collaborative activities (e.g., Journal Club, seminar series) and to reach out for advice, mentorship, or support related to their partnered research, at any time.
The removal of financial barriers was not a primary goal of this initiative. However, we included financial support to increase the diversity of applicants and to ensure that the partnerships that are supported were reciprocal, ethical, and aligned with our values. We wanted this training opportunity to be accessible to trainees, regardless of their research funding, research environment, and level of patient-oriented research experience of their supervisor(s). Financial support ensured trainees could recognize the value of lived expertise through honorariums and co-production and provides the opportunity for trainees to develop, and receive feedback on, a budget to support their engagement plans. Applicants are required to submit a budget (maximum $1500 CAD) with at least 25% allocated to directly support people with lived experience (e.g., honourariums, travel reimbursement, training).
Implementation
To date, the program has been coordinated online. Meetings with the fellowship review team and the trainees’ meetings with Collaborative staff and older adult and caregiver partners have occurred via Zoom. However, funded trainees are encouraged to choose their location and means of partner engagement based on the preferences of the experts by experience they plan to engage and the feasibility for their project. Virtual meetings have both advantages (e.g., flexibility, reduced transportation burden) and disadvantages (e.g., digital literacy and access requirements, reduced non-verbal communication) when compared to in-person meetings.
All 10 of the Collaborative older adult and caregiver partners have been actively engaged in the implementation of this program. Partner team meetings with fellowship trainees have had a minimum of five partners. Seven of the 10 partners have served at least once as a member of the application review committee (with two partners per round).
We have integrated a quality improvement framework into the program and encourage informal feedback and suggestions throughout the year. We also collect information from all stakeholder groups: through the fellowship trainee 6-month reports; through supervisor support forms at the application phase; and after partner team meetings with fellowship trainees. At the end of review committee meetings, we reflect on the latest round of applications and discuss potential improvements for the next program offering based on our individual and collective experiences with the program operations.
Fellowship outcomes
At the time of writing, the fellowship has been offered a total of four times in two years (every six months). We have supported and mentored 10 graduate students, from various disciplines, in conceptualizing, planning, and implementing engagement of people with lived experience, as experts, in their research. Examples of trainee projects include a systematic review, a qualitative case study, and analysis of secondary data. From evaluations, the Collaborative’s older adult and caregiver partners have unanimously rated the value of this training opportunity as “excellent” in terms of supporting meaningful engagement of older adults and caregivers in aging-focused research. Funded trainees have similarly reported being appreciative of the personalized support and mentorship by the Managing Director and the Collaborative’s older adult and caregiver partners. Trainees have shared their perspectives on the value of the program and a range of “a-ha” moments they have experienced – from valuing the peer component (as a means to share challenges and successes with other fellowship trainees) to learning from the Collaborative’s older adult partners that their research may not be of interest to all audiences. All trainees agreed or strongly agreed that their knowledge about patient-oriented research had increased because of the fellowship program. The impact on other outcomes, such as their comfort with engaging people with lived experience in research, planned or completed engagement activities, and future research plans, were less consistent although such outcomes were identified to be strongly impacted by at least one trainee. Notably, one trainee indicated that the fellowship had highlighted potential risks of engaging people with lived experience, if not done well, which initially affected their comfort of involving those with lived experience in their research project.
Time constraints were the most prevalent challenge identified by trainees: time pressures of competing activities (with their program of study more broadly); difficulty finding mutually agreeable times for meetings with partners with lived experience; and research and engagement steps (e.g., research ethics board approval, connecting with community-based organizations, recruitment of partners with lived experience) taking longer than anticipated. Another challenge identified by trainees was connecting and engaging people within their target population and ensuring that a range of perspectives were represented. Based on conversations, this often resulted in research partners who were less diverse, in terms of important characteristics such as ethnicity, gender, and education, than the study’s target population and what was desired. When asked to reflect on these challenges, trainees noted the need to tailor approaches to specific partner organizations and the importance of reflecting on “who was not at the table.” These challenges are not unique to trainees but may be accentuated in their context where many have limited power and control over external requirements and may also have fewer existing relationships (with community organizations and individuals with relevant lived experience) on which to build and may lack stability for fostering ongoing relationships.
Promising practices for sustainability and scale-up
Reflecting on our experience to date, we believe the co-development of this training opportunity was critical to its success. We continue to both revise the program and celebrate its achievement in supporting our mandate through various knowledge translation activities (e.g., conference presentations, newsletters). The commitment and enthusiasm of the older adult and caregiver partners in reviewing applications, meeting with successful trainees, and offering their guidance on and across their projects, creates a sense of connection and energy for the initiative. The lived experiences of the Collaborative’s older adult and caregiver partners are diverse and extensive in many areas – including culture, education, and health. This broad range of lived experiences benefits the trainees when planning who and how to engage experts by experience in their research and enriches the training for all involved, including trainee (faculty) supervisors. The one-on-one discussions and mentorship components of our fellowship are fundamental to the spirit and goals of the program but could limit scalability of the initiative. However, as more experts by experience, trainees, and researchers develop expertise with research done in partnership, there will be opportunities for additional mentors, peer mentorship, and train-the-trainer models. There are also knowledge syntheses, reflective papers, and resources that are being developed and disseminated, which can support the creation and implementation of training opportunities similar to this training fellowship. Building on existing relationships and structures, we created this program to help us strengthen our institutional mandate. Our approach was largely informed by our collective experiences (as educators, trainees, research partners with lived experience, and researchers with extensive experience working with community), our principles of partnership, and a quality improvement approach (of plan-do-study-act). However, other teams may find resources such as Engage for Equity’s Tools and Resources for Evaluation and Collective-Reflection of Community Based Participatory Research (CBPR) and Community Engaged Research (CEnR) [21] useful as a framework for planning, reflecting on, and improving their own training programs created in partnership.
As previously mentioned, one trainee in the program shared their increased concern for causing unintentional harm while working in partnership (e.g., through choice of language). The Collaborative promotes reflection and awareness of potential risks of engagement, which have the potential for ripple effects on community trust and relationships between others from the same academic institution. This fellowship program creates an environment for trainees to explore and discuss such risks, allowing them to plan ahead and try to mitigate potential sources of harm. Understanding these risks is a critical part of their learning. Trainees (vs. established researchers) may face additional barriers if conducting their research in partnership and also operate under conditions that may increase the risk of what Richards and colleagues [15] refer to as “how it can go wrong.” Research conducted by trainees plays a crucial role in the advancement of knowledge. However, mentorship is critical for trainees to develop complex research skills, such as those necessary for conducting research through authentic partnerships, and to conduct ethical and impactful research [22,23,24]. As such, mentorship programs may be critical to mitigating these risks and can facilitate trust and reciprocal relationships with community organizations and people with lived experience. Risks that may be especially relevant in trainees’ research are tokenism and the sense of loss at the end of the engagement. A trainee may move on with their career, possibly shifting research focus and changing institutions, without continuing to pursue the broader objectives and subsequent phases of their research project. This situation can leave partners and advisors without the chance to apply their knowledge and insights in activities that build upon the research project. To mitigate this risk, we encourage fellowship trainees to embed reciprocity in their engagement plans throughout their project and to consider the post-project transition for people who have partnered with them: what were their partners’ goals for engaging in the project and are there opportunities or people the trainees can connect them to that may help them achieve their goals? As an organization, we can also help to bridge this gap, by acting, in part, as a central hub for researchers and partnership opportunities.
Add Comment