Patient-Centered Research Priorities: A Mixed-Methods Approach from the Colorado Children's Outcomes Network (COCONet)

Abstract

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 communityengaged 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. (J Am Board Fam Med 2019;32:674-684.

Practice-Based Research Today: A Changing Primary Care Landscape Requires Changes in Practice-Based Research Network (PBRN) Research

“…This issue of JABFM contains 5 articles describing processes and outcomes of connecting with stakeholders. [5][6][7][8][9] The importance of building, maintaining, and, when needed, re-establishing relationships with those for who we exist-physicians, providers, office staff, patients, and in today's health care landscape, health systems, insurance companies, and government agencies, cannot be overemphasized. Luckily, this is something many PBRNs do well-As Rhyne and Fagnan 10 noted last year, "PBRNs are experts in long-term engagement strategies, relationships, and collaboration."…”

“…Two pediatric PBRNs, Colorado Children's Outcomes Network (CocoNet) in Colorado and PittNet in Pennsylvania both report on obtaining direct patient and parent input. 7,8 Using focus groups, interviews, and/or surveys, these PBRNs developed a better understanding of research topics and reasons for participating in research from a patient and parent perspective. The Southeast Regional Clinicians Network (SERCN) describes reenergizing a PBRN after a period of inactivity and a change in leadership.…”