Bringing Parent Voices into a Pediatric Research Network Through a Virtual Parent Panel

Abstract

Background: Additional strategies are needed for longitudinal engagement of parents as key stakeholders in practice-based research networks (PBRNs). Our objective was to create a virtual Parent Panel for our PBRN to engage parents remotely and use their input on child health research. Methods: We used an existing online parent survey study to invite parents to participate longitudinally by completing brief, monthly online questionnaires about child health research topics. The existing survey assessed perceptions and preferences for pain management of routine child vaccinations. Results: Of 412 parents who completed the existing online survey, 233 parents expressed interest in participating in our Parent Panel and 131 parents confirmed interest. Of those parents, 105 provided demographic information: most were female (96%), married (83%), white (84%), between 31 to 40 years (61%), and had a college degree (83%). Parents were motivated to participate in our Parent Panel for a variety of reasons: altruism, a unique perspective, having a voice within child health research, a personal history of working within health care/research, and previous health care experiences with their children. Parents thought their participation could help research, parents, and children. We sent monthly electronic surveys with increasing parent enrollment to up to 131 parents, with monthly response rates ranging from 35% to 80%. Multiple changes have been implemented in our PBRN based on parent feedback. Conclusion: We successfully created and longitudinally maintained a virtual Parent Panel by using valuable parent feedback to make changes in our PBRN. PBRNs could adapt a similar strategy to virtually engage parents as key stakeholders for improving child health research.

Views and experiences of youth participants in a pediatric advisory board for human subjects research

“…To our knowledge, this is one of the first PABs to engage youth members for bidirectional conversations with researchers with the goal of enhancing pediatric research participation. Previous PABs and pediatric research networks have been reported, but are either focused on clinical experiences or do not incorporate the voices of children, relying instead on parents, child health advocates, and pediatric specialists to guide and protect youth research participants [11][12][13]. In this study, we share the experiences and insights of adolescent PAB members and their parents on the benefits of participating in the PAB and providing feedback on research studies involving youth participants.…”

Lessons Learned with a Triad of Stakeholder Advisory Boards: Working with Adolescents, Mothers, and Clinicians to Design the TRUST Study

“…The use and impact of parent or mother advisory groups has not been well documented in the pediatric literature; however, there has been significant research supporting the involvement of caregivers in medical decision-making to improve patient outcomes [ 9 , 10 , 24 , 25 , 26 , 27 ]. While there is still a scarcity of published data, the use of parents in the development of pediatric interventions has been increasing in the last decade, as parent involvement can improve pediatric research engagement by increasing participant enrollment and retention, contributing to the development of interventions and measurement tools, and identifying potential issues in a research project [ 19 , 24 , 28 , 29 , 30 , 31 ].…”

The Changing Face of Primary Care Research and Practice-Based Research Networks (PBRNs) in Light of the COVID-19 Pandemic

“…21 Additional strategies such as virtual solutions are now needed as PBRNs consider how to facilitate longitudinal engagement of stakeholders and the needs for virtual engagement created by COVID-19. Engster et al 22 describe the creation of a virtual Parent Panel to engage parents remotely and use their input for child health research. The authors utilized an existing research study on pain management during routine child vaccinations to develop regular communication with a group of parents/patient stakeholders to provide feedback on research ideas.…”