Involving patients, families and communities in the planning and implementation of research improves the quality and applicability of research findings. Unfortunately, parents and clinicians who have first-hand experience caring for infants in neonatal intensive care units NICUs rarely have the opportunity to provide input in the creation of prematurity research agendas, nor are they consulted in identifying gaps in the current research. The California Preterm Birth Initiative is working to change this.
On June 7th, 2018 PTBi-CA hosted a special event, the All-Site Parent-Clinician Advisory Board (PCAB) Meeting, that brought together parents and clinicians to set a new research agenda for the Newborn Family Research Collaborative (NFRC). The NFRC is a consortium of the neonatal intensive care units (NICUs) at Benioff Children’s Hospitals in San Francisco and Oakland, and Community Regional Medical Center in Fresno. Each NFRC hosts its own PCAB to advise on prioritizing research that matters most for improving outcomes and equity for preterm infants. The All-Site PCAB meeting was an opportunity to bring all three sites together, fostering community between regions and collaborate broadly on research and priority setting.
The centerpiece of the June All-Site Meeting was the presentation of each group’s final research priorities, delivered by parent representatives. Along with their groups chosen topics, the parents spoke about what it was like to work with others who have experienced a premature birth. One mother explained, "The first PCAB meeting was super emotional… but it was really powerful to process together. We turned something really traumatic into something really positive." Though each site had met various times throughout the year, the meeting was the first time all of the groups were able to come together, creating a strong sense of community.
One of the main goals of the event was for the entire group to choose one or two research topics from those presented to be called out in PTBi-CA’s August grant proposal request. To accomplish this, participants were asked to vote digitally on their preferred topics from the combined list. The two top research priorities chosen were; developmental outcomes and effective support for infants and families after discharge from the NICU. Though there were many highlights throughout the event, the most important takeaway was that parents and clinicians need to play a key role in determining research priorities in order to accomplish a healthier future for all children born preterm. Read more about PTBi's PCAB and NFRC here.
