The Role of Community- Based Organization-Hospital Partnerships in Enhancing Hydroxyurea Uptake and Sickle Cell Disease Care

Background: Hydroxyurea (HU) is safe and effective oral therapy for sickle cell disease (SCD). Its use significantly reduces complications and improves survival and quality of life. In 2014 the National Heart, Lung, and Blood Institute recommended HU for all children with homozygous SCD and sickle beta-zero thalassemia. However, despite these guidelines and HUs proven efficacy, use remains low. Barriers include access to comprehensive care, social economic challenges, mistrust and misinformation.
Recognizing these gaps, the Office of Minority Health (OMH) awarded NYC Health +Hospitals (H+H) a grant 2020 to increase HU use among eligible children. To address this problem, we used a multifaceted approach, combining provider education system enhancements, financial incentive, and community-based partnership s. These interventions increased HU prescribing and adherence rates and decreased emergency department visits. This study evaluates the role CBO -hospital partnerships in improving uptake and identifies key structural and policy changes necessary for lasting impact.

Methods: Health Research Inc. Our independent evaluator conducted a mixed-methods evaluation to assess the contributions of CBOs in supporting patients and families. Key data sources included: 1) interviews with healthcare providers, CHWs, and administrators, 2) provider surveys measuring engagement and perceived effectiveness of CBO partnerships, and 3) tracking CBO referrals and social support interventions.

Results: Our findings indicated that Community-Based Organizations (CBOs) played a vital role in improving adherence to health interventions (HU) and reducing Emergency Department visits. They accomplished this by addressing healthcare gaps, enhancing patient engagement, tackling social determinants of health, and providing culturally competent education and support. Specifically, their contributions included:1. Providing wraparound support: They connected families with essential resources such as food security, housing assistance, and help with navigating insurance, often in collaboration with Community Health Workers (CHWs).
2. Enhancing patient and caregiver education: They organized awareness sessions about health interventions, established peer support networks, and offered culturally relevant educational materials to dispel myths and improve adherence.3. Bridging healthcare gaps: —CHWs, in partnership with CBOs, facilitated referrals and follow-ups, which improved communication between providers and patients and ensured continuity of care.

Conclusions: Our findings support the transformative potential of CBO-hospital partnerships in improving hydroxyurea (HU) uptake and comprehensive sickle cell disease (SCD) care. By integrating CBOs into hospital-based care models, these partnerships bridge critical gaps in access, patient engagement, and social support, leading to improved adherence and reduced emergency department utilization.To sustain these gains, health systems, and policymakers must prioritize the formalization of CBO-hospital collaborations through:• Structured referral pathways that ensure patients receive consistent support beyond clinical settings.• Sustainable funding models that move beyond grant-based support, embedding CBO partnerships into long-term healthcare financing and policy frameworks. By fostering coordinated partnerships between hospitals and CBOs, healthcare systems can build trust, improve outcomes, and advance health equity for individuals with SCD. Expanding and institutionalizing these collaborations will ensure lasting improvements in HU adherence, patient-centered care, and overall health system effectiveness.