Partnering with Home-Based Health Workers to Improve Equity in Newborn Screening: A PCORI-Guided Approach

Vanessa Franco – Student, Bioethics, Case Western Reserve University School of Medicine; Angela Newman-White, MA – First Year Cleveland; Marsha Michie, PhD – Case Western Reserve University School of Medicine; Aaron Goldenberg, PhD, MPH – Case Western Reserve University School of Medicine

Abstract: Newborn Screening (NBS) is a critical public health program that enables early detection and treatment of rare but treatable conditions in infants. However, disparities persist in NBS education, timely diagnosis, and treatment initiation, disproportionately affecting infants of color. This study applies the Patient-Centered Outcomes Research Institute (PCORI) Engagement Framework to engage home-based healthcare workers (doulas, midwives, and patient navigators) in identifying and addressing these disparities.
Guided by PCORI’s six engagement principles, our research took the following actions:
1.Reciprocal Relationships – Held structured stakeholder meetings where home-based healthcare workers were educated about NBS and contributed their lived experiences to shape the research agenda.
2.Co-Learning – Facilitated workshops to ensure that both researchers and stakeholders shared knowledge on the ethical, clinical, and systemic aspects of NBS data.
3.Partnerships – Established long-term collaborations with organizations to ensure that NBS education initiatives are sustainable and community-driven.
4.Transparency & Trust – Maintained open communication throughout the study, ensuring that home-based health workers had ongoing input in survey design, data interpretation, and next steps.
5.Shared Leadership – Empowered home-based health workers to co-develop the survey instrument, ensuring the questions reflected their perspectives.
6.Commitment to Impact –Developed a community-led educational intervention to improve NBS awareness, access, and outcomes.
This equity-driven, collaborative approach fosters beneficence in NBS research by centering the voices of those who directly support underserved families. It demonstrates how equity-driven research practices can lead to systemic change. The findings emphasize the ethical imperative of partnering with communities in designing and implementing public health interventions.

Keywords: Newborn Screening (NBS), Community Engagement, Health Equity