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

Abstract

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. 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. 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. 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.