Abstracts

This abstract has been invited to present during the Broadening Representation Inclusion and Diversity by Growing Equity (BRIDGE) poster session

Rationale: In 2020, due to COVID-19, the pediatric neurology clinic at Boston Medical Center (BMC) switched from in-person to contactless community programs. In 2021, a quality improvement community needs assessment (CNA) was conducted to evaluate the alignment between existing programming and patient/caregiver needs. The results of the CNA emphasized (1) resource support navigation and (2) accessible social programming. Using the community-based participatory research (CPBR) model, these findings were utilized to design more effective outreach and more inclusive programming for two endeavors, a resource support specialists initiative (RSS) and a healthcare transition program (HCT).

Methods: Prior to the CNA, patients/caregivers received resources from student volunteers, who made referrals to resource specialists only for epilepsy-specific resource needs. In response to the need for more robust resource navigation, the clinic discontinued volunteer involvement and centered resource specialists as the point people for all patient/caregiver resource needs, including connections with the wider resource network at the Epilepsy Foundation of New England (EFNE)._x000D_  _x000D_ Similarly, before the CNA, youth patients could be referred by their neurologists to participate in virtual, one-on-one discussions about healthcare transition with a graduate student mentor. After the CNA highlighted the importance of accessible social support to patients/caregivers, the HCT was redesigned into a private, moderated, online community for youth patients to build self-management skills and peer relationships via asynchronous social and health educational activities. Youth could be referred by their neurologists or recruited via volunteer outreach.

Results: Upon being realigned to meet the needs indicated in the CNA, both the HCT and RSS reached and served more patients/caregivers. Additionally, the cohorts of both revised initiatives included more patients of color and from communities in low-income/healthcare professional shortage areas. Also, the redesigned HCT cohort included more patients reliant on public health insurance. _x000D_ _x000D_ Pre-CNA, both the HCT and RSS required staff-supervised teams of student volunteers. The post-CNA programs utilized more streamlined teams with less volunteers.

Conclusions: When adjusted to address the patient/caregiver needs illustrated in the CNA, the outreach, recruitment, engagement, and participant diversity of both the HCT and RSS initiatives increased. These findings illustrate that the programmatic changes made in response to the CNA improved the accessibility, inclusivity, and relevance of the HCT and RSS. These results are consistent with the CPBR framework and add to the body of literature. _x000D_  _x000D_ This research is significant because it demonstrates that taking action to honor patient/caregiver voices can meaningfully inform the development of novel solutions to traditional barriers affecting patient/caregiver engagement, as well as improve the reach and appeal of existing community outreach programs.

Funding: Federal Health Resource and Services Administration’s Maternal and Child Health Bureau