The Role of Community Health Workers in Promoting Health Equity in Pediatrics

Community health workers (CHWs) are trusted members of the communities they serve and have a deep understanding of community needs. They facilitate community members’ access to health care services and may serve as cultural brokers between community members and their health care providers. Given their role in promoting appropriate health care utilization, health behavior change, and improved health outcomes, CHWs have the potential to address systemic barriers that lead to health care inequities.¹ Currently, individuals who fall under the CHW role have a variety of different titles – patient navigator, family partner, health care navigator - but all share a common set of activities. In response to documented racial and ethnic disparities in early autism diagnosis, we conducted two pilot randomized clinical trials to examine the feasibility and acceptability of family navigation, a CHW implemented intervention, as a strategy to improve timely completion of autism diagnostic evaluations among young children from historically marginalized communities. Family navigation expands traditional patient navigation to work with entire families rather than the individual patient and navigates families to community-based and school services outside of the health care setting. CHWs, who in this study were referred to as family navigators, supported families in completing their child’s autism evaluation and engaging in recommended services. Findings from the pilot studies revealed that, when compared with enhanced usual care, family navigation has the potential to increase timely completion of autism evaluations and improve family satisfaction with care.²

In this progress report, we discuss the research that has been published on the topic since we submitted our original study report on November 17, 2019. There has been new research documenting the effectiveness of CHWs to affect child health outcomes as well as a movement within the health policy arena to sustain the role. Our team conducted a subsequent large multisite randomized clinical trial (“Project EARLY”) as part of National Institute of Mental Health’s Autism Spectrum Disorder Pediatric Early Detection, Engagement and Services Network, whose aim was to develop and test interventions that coordinate early autism screening, evaluation, and engagement in services. Study findings confirmed the efficacy of family navigation to reduce time to autism diagnostic resolution while also uncovering family navigation’s differential impact by ethnicity. The positive effects of family navigation were significantly greater for Hispanic families compared to non-Hispanic families, suggesting that the intervention may be an effective strategy to reduce disparities experienced by minoritized subgroups.³ Importantly, additional findings from Project EARLY demonstrated that the benefits of family navigation extended to families’ participation in Early Intervention services.⁴ In a qualitative study with family navigators and parents of children who received family navigation, participants reported that the family navigators provided critical emotional support throughout the autism diagnostic process and helped alleviate barriers related to unmet social needs. Parents suggested that the intervention be extended across time to assist families with the transition from Early Intervention to school services.⁵

Beyond our autism-focused work, recent studies document the impacts of CHWs in other pediatric contexts. Pantell et al. 2020 conducted a randomized clinical trial to study a CHW based intervention to address families’ unmet social needs in pediatric primary care and urgent care clinics. When compared with an active control group (receiving written information about local resources), the children in the intervention group had a 69% reduced risk of hospitalization over 12 months.⁶ CHWs have also been shown to improve asthma control, increase symptom-free days, reduce emergency department visits, and improve caregiver quality of life. Asthma-related CHW responsibilities included education about asthma management, demonstration of medication use, and referrals to address environmental triggers.⁷ CHWs have also been successfully deployed in primary care pediatric settings to support young adults’ transfer from pediatric to adult care.⁸

The clear benefits of CHWs in pediatric healthcare have led to new conversations about financing and sustainability. The national focus on advancing health equity since the COVID-19 pandemic has sparked initiatives such as the Centers for Medicaid and Medicare Services’ Framework for Health Equity and the US Department of Health and Human Services’ Community Health Worker Training Program. Such initiatives have created opportunities for healthcare transformation efforts that support the sustainability of the broad CHW workforce. Historically, CHW programs have been funded through grants, resulting in loss of experienced CHWs when the grant ends. More recently, shifts toward direct reimbursement through the existing financing infrastructure have provided pathways to a more sustainable workforce.¹ Medicaid reimburses CHWs for patient education and health care navigation in 29 US states, either through state plans, health home care teams, section 1115 demonstration waivers, or managed care arrangements. In addition, the Consolidated Appropriations Act of 2023 was recently signed into law and authorized $50 million annually through 2027 for recruiting, hiring, training, and retaining CHWs to work in medically underserved communities.⁹ Despite these advances, barriers continue to hinder sustainable payment models for CHWs: 1) traditional fee-for-service models do not provide a direct reimbursement pathway for most CHW work, because the billing codes are centered around medical procedures rather than the type of work CHWs perform; 2) training and certification, which may be required for reimbursement, may be inaccessible to community members who seek to become CHWs, and 3) quality measures are not well aligned with patient outcomes that CHWs affect (for example, helping a family who does not speak English access needed services or addressing systemic racism and discrimination).¹

There are several recommended future directions for investigating the impact of CHWs on autism outcomes, specifically, and child well-being more generally. The first is a shift to implementation research; implementation studies could deepen understandings of how to best deliver CHW services. As CHW interventions involve multiple components, there is a need to understand which components are most effective and efficient for outcomes of interest. Future research should consider study designs beyond standard two arm randomized clinical trials, such as factorial experiments using Multiphase Optimization Strategy, which aims to optimize interventions by empirically balancing effectiveness, affordability, scalability, and efficiency. ⁵ Second, there is a need for more research about the impact of CHW policies on child health outcomes and healthcare costs. In adult oncology, CHW services delivered in a fee-for-service or alternative payment model have demonstrated financial benefits such as reduction in unnecessary hospitalizations as well as reductions in provider turnover.¹⁰ However, little is known about how CHW policy contexts influence the roles of CHWs and health outcomes in pediatric practice. Given the well-documented efficacy of CHW interventions for addressing pediatric health inequities, the key next steps involve ensuring the successful implementation and sustainability of CHWs in pediatric healthcare settings.