Article type
Abstract
Background: Over the last 2 decades, there have been increasing efforts to involve patients and families in health research. This is motivated by increasing recognition that patient involvement can enhance research processes, make research outputs more relevant, optimize translation and uptake of research, and improve health outcomes. In 2016, we developed the Pediatric Parent Advisory Group (P-PAG) to support our research that focuses on knowledge synthesis and knowledge translation (KT) in child health. Despite increasing interest in patient-oriented research, there are few published evaluations of long-standing patient engagement activities.
Objectives: 1) Describe our experiences creating the P-PAG; 2) describe how we have involved parents in knowledge synthesis and knowledge translation activities; 3) present results from parent evaluations
Methods: We created a model for codeveloping KT tools that embed results from systematic reviews (SRs). The model has our P-PAG at its core and includes topic prioritization; SRs about clinical management and parents’ experiences; qualitative interviews with parents about their experiences; prototype development and review by parents and clinical experts; revision of tools and usability testing by parents; and widespread dissemination. P-PAG meetings are held monthly; we discuss and gather parent input on SRs and KT tool development. We embed ongoing mixed methods evaluation to learn about parents’ experiences as P-PAG members, with the aim of providing a meaningful experience while meeting the research goals.
Results: Working together with parents, we have developed more than 40 KT tools on more than 20 child health topics; tools are publicly available (echokt.ca, trekk.ca, YouTube). Responses from parent evaluations were mostly positive and improved across the years. Key feedback that influenced group operations included providing greater context for discussions and following up about how parents’ feedback influenced the final products. Parents wanted more diversity within the group and expressed an interest in learning how the research impacts the health system and health outcomes.
Conclusions: Our experience working with parents over many years has yielded much insight about patient engagement in knowledge synthesis and knowledge translation activities. Regular evaluations are key to identifying and responding to parents’ needs and expectations to ensure engagement is meaningful.
Objectives: 1) Describe our experiences creating the P-PAG; 2) describe how we have involved parents in knowledge synthesis and knowledge translation activities; 3) present results from parent evaluations
Methods: We created a model for codeveloping KT tools that embed results from systematic reviews (SRs). The model has our P-PAG at its core and includes topic prioritization; SRs about clinical management and parents’ experiences; qualitative interviews with parents about their experiences; prototype development and review by parents and clinical experts; revision of tools and usability testing by parents; and widespread dissemination. P-PAG meetings are held monthly; we discuss and gather parent input on SRs and KT tool development. We embed ongoing mixed methods evaluation to learn about parents’ experiences as P-PAG members, with the aim of providing a meaningful experience while meeting the research goals.
Results: Working together with parents, we have developed more than 40 KT tools on more than 20 child health topics; tools are publicly available (echokt.ca, trekk.ca, YouTube). Responses from parent evaluations were mostly positive and improved across the years. Key feedback that influenced group operations included providing greater context for discussions and following up about how parents’ feedback influenced the final products. Parents wanted more diversity within the group and expressed an interest in learning how the research impacts the health system and health outcomes.
Conclusions: Our experience working with parents over many years has yielded much insight about patient engagement in knowledge synthesis and knowledge translation activities. Regular evaluations are key to identifying and responding to parents’ needs and expectations to ensure engagement is meaningful.