Building an Inter-Professional, Community-Informed, County-Wide Neonatal Abstinence Syndrome Collaborative

Background and Significance: Effective healthcare quality improvement and patient centered outcomes research requires meaningful engagement of patients, community members and stakeholders in identifying research priorities, developing comparative effectiveness studies, and disseminating research findings. Community and patient engagement in the systematic evaluation of health outcomes is particularly important in health conditions that disproportionately affect specific populations, such as with Neonatal Abstinence Syndrome (NAS). Recent reports highlight the persistence of poor healthcare quality and patient outcomes in specific populations (low income; racial and ethnic minorities; individuals living in rural areas; and lesbian, gay, bisexual, and transgender populations). In addition to health inequity, these patient populations are disproportionately not engaged in research. Reports from the Agency for Healthcare Research and Quality (AHRQ), National Institutes of Health (NIH) and the Patient Centered Outcomes Research Institute (PCORI) stress the need to engage underserved populations in the research process in order to effectively address healthcare disparities in the nation; however, there are few venues where underrepresented patient populations can build capacity for research, connect with professionals and engage in discussions about the implications of research findings. There is an opportunity for community engaged research collaboratives to enhance capacity for patients, community members, clinicians, researchers and other stakeholders to engage in comparative effectiveness research (CER) to improve health outcomes for underrepresented populations.

Purpose: The purpose of this Tier 1 Patient Centered Outcomes Research Institute (PCORI) project is to establish a Bexar County Neonatal Abstinence Syndrome Collaborative. Rates of NAS in the United States have tripled since 2000. Bexar county, Texas, the San Antonio area, has been disproportionately affected, accounting for one third of NAS cases reported annually in the state. The goal of this collaborative is to identify community-driven research priories and develop patient-centered CER studies to reduce NAS rates and improve care in Bexar County.

Methods: During a nine-month project period, the Bexar County NAS Collaborative focused on the following activities: 1) Enhance capacity for patients, community members, clinicians, researchers and other stakeholders for a comparative effectiveness research (CER) study focused on NAS, 2) Establish a research question and 3) Develop a CER study to compare interventions for reducing NAS rates and improving outcomes. These activities were facilitated through the establishment of an advisory council and development of a social media campaign to expand community engagement. The Advisory Council included partners that represented various stakeholders including patients and family members, state government organizations, clinicians, and researchers. These individuals guided the governance structure, decision making, and planning of community forums. A social media campaign was developed as a means for disseminating information about NAS and the collaborative, recruiting community stakeholders to participate in community forums, and facilitating active communication. Finally, the collaborative planned two community forums (December 2016 and March 2017) to identify community driven priorities to improve NAS outcomes in Bexar County.

Findings and Future Directions: This 9-month project began in August of 2016 and will be completed by May 2017. To date the Bexar County NAS Collaborative has established an advisory board and governance structure. Implementation of the social media campaign is currently in progress. Implementation is being guided by stakeholder input. Results from the community forum will be finalized in May 2017 and will be used to guide the development and implementation of a NAS related CER study in the Bexar County community.