Background: In response to a growing movement to involve patients and community stakeholders in health research, we established a parent advisory group in 2016. The group meets regularly to act as advisors and partners for our research program. The purpose of this paper is to describe our experiences establishing the group, and results from parent evaluations.
Methods: We contacted 191 organizations to recruit parents and caregivers of children who wanted to contribute to child health research. Our initial goal was to recruit 8 to 10 parents who would meet regularly (approximately 8 times per year). We conducted an online baseline survey of members after the first two meetings to understand motivations for participating and early experiences. Sixteen months later we conducted another online survey to identify what was going well and areas for improvement.
Results: Twelve parents initially joined the group. The baseline survey (n = 9 complete) identified motivations for participation: wanting a patient/family voice in health research; personal experience accessing health system for child's care; wanting to improve healthcare communications. Concerns about participation included: having sufficient time to attend meetings; whether contributions would be worthwhile; and uncertainty about how the group's input would be used in practice. Parents identified aspects that were working well: opportunity to provide constructive feedback; diversity among parents involved; well-run and organized meetings (agenda and materials sent prior to meeting, skilled facilitation, adequate time for discussion). Items parents identified as not working well were: fluctuating attendance; not knowing others in the group; challenges if attending remotely. At follow-up, there were seven active members. The follow-up survey (n = 5 complete) identified positive feedback related to group dynamics (e.g., collegial, everyone participates) and organization of meetings. Suggestions for improvement included increasing membership, regular attendance, and providing adequate information/context to allow meaningful input.
Conclusions: Our experience establishing a parent advisory group and evaluation of the group by parent members have yielded tremendous insights around involving parents and patient proxies in health research. The parent advisory group is a dynamic entity requiring ongoing communication between researchers and members. Effective means of evaluating engagement is essential to ensure it is meaningful. Dedicated time, funding and resources are required for success.
Keywords: Advisory group; Child health; Evaluation; Knowledge mobilization; Knowledge translation; Parents; Patient engagement; Patient-oriented research.
In 2016 we developed a parent advisory group to inform our research program in knowledge translation (i.e., sharing research in accessible ways to inform decision-making) for child health. The group provides input from a parent perspective. We conducted an online baseline survey of parent members and a follow-up online survey 16 months after the group had started. The surveys helped us understand reasons for parents’ participation, what they thought was working well with the group, and areas for improvement. Parents valued the opportunity to provide constructive feedback on research processes and outputs. They felt the meetings were well-organized and the group was open and welcoming. Parents felt that regular and ongoing communication with the researchers was critical for meaningful engagement. To this end, funding to support a dedicated coordinator was considered essential. Parents appreciated that the researchers organized the group around parents’ needs in terms of timing of meetings (evenings) and reimbursement for expenses to attend meetings (travel, childcare). Parents considered this type of group to be unique, particularly as it supports a research program over the long-term rather than for specific projects, and because of the relative maturity in terms of clearly defining group purpose, structure, and engagement approach. The ongoing involvement allows for benefits in terms of building relationships, providing many and varied opportunities to interact, and allowing parents to see how their input is implemented. Finally, an evaluation mechanism with communication of results and a commitment to implement findings is considered critical. Our parent advisory group can provide a model for other researchers or research organizations.