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Patient-Centered Research Priorities: A Mixed-Methods Approach from the Colorado Children's Outcomes Network
Sarah E Brewer1, Natalie M Crump2, Sean T O'Leary2
1From the Adult and Child Center for Health Outcomes Research and Delivery Science, Children's Hospital Colorado and University of Colorado-Anschutz Medical Campus, Aurora, CO (SEB, STO); Department of Family Medicine, University of Colorado Anschutz Medical Campus, Aurora, CO (SEB); Health and Behavioral Sciences, University of Colorado-Denver, Denver, CO (SEB); Colorado Children's Outcomes Network (COCONet) Network Advisory Board, Aurora, CO (NMC); Department of Pediatrics, University of Colorado-Anschutz Medical Campus, Aurora, CO (STO). Sarah.Brewer@CUAnschutz.edu.
Insights
Practice-based research networks (PBRNs) identified key pediatric health priorities through stakeholder engagement. Mental health integration and care transitions were top research areas for immediate action.
Area of Science:
- Pediatric Health Research
- Health Services Research
- Community-Engaged Research
Background:
- Practice-based research networks (PBRNs) conduct research for direct patient care translation.
- Stakeholder involvement, especially from patients and parents, enhances research relevance.
- This study focused on developing patient-centered outcomes research priorities in pediatric health.
Purpose of the Study:
- To develop a research agenda for a pediatric PBRN using a community-engaged process.
- To identify and prioritize research areas in pediatric health relevant to stakeholders.
- To inform the research priorities of the Colorado Children's Outcomes Network.
Main Methods:
- Employed a mixed-methods, community-engaged approach.
- Conducted 52 stakeholder interviews and 1 focus group (n=9).
- Utilized a web-based survey (n=75) and Network Advisory Board input for priority setting.
Main Results:
- Six key pediatric health topic areas emerged from qualitative data.
- Pediatric mental health integration with primary care was the highest ranked priority.
- Immunization uptake and pediatric-to-adult care transition were also identified as priorities.
Conclusions:
- The pediatric PBRN identified and selected three high-priority research areas.
- Community-engaged, mixed-methods approaches are effective for setting pediatric research priorities.
- This work supports the development of patient-centered pediatric research agendas.
Background:
Practice-based research networks (PBRNs) perform clinically relevant research designed for immediate translation to patient care. Research questions developed with patients and parents are more likely to be relevant to stakeholders. This case study developed priority areas for patient-centered outcomes research in pediatric health within the context of the Colorado Children's Outcomes Network, a statewide pediatric PBRN, and in collaboration with stakeholders.
Methods:
We undertook a mixed-methods, community-engaged process to understand and develop a research agenda for our pediatric PBRN. With a stakeholder-engaged research team, we conducted 52 stakeholder interviews and 1 focus group (n = 9) addressing topics including child health issues, personal health care experiences, community health, and the health care system. Transcripts were coded and analyzed by researchers and parent advisors. We conducted a Web-based survey of PBRN stakeholders (n = 75) to rate priority issues identified in qualitative findings. Finally, we facilitated a community-engaged mixed-methods interpretation and issue selection process with our Network Advisory Board to identify issues of highest importance for Colorado Children's Outcomes Network.
Results:
Six topic areas of importance to pediatric health stakeholders emerged from qualitative work. Participating stakeholders used rating surveys to rank these 6 topics. Pediatric mental health coordination and communication/integration with primary care was ranked as the most important and highest research priority. The Network Advisory Board additionally identified immunization uptake and transition from pediatric to adult health care as research priority areas.
Conclusions:
This pediatric PBRN identified numerous research priorities in pediatric health and selected 3 for immediate research action. PBRNs can use community-engaged, mixed-methods research approaches to set research priorities and develop patient-centered pediatric research agendas.