Development of a Framework to Describe Roles and Responsibilities for Sickle Cell Community Health Workers

Background: Evidence is mounting for the effectiveness of community health workers (CHWs) at improving processes and outcomes of care in sickle cell disease (SCD) and other chronic diseases. But recognition is stymied by over 60 titles currently used for CHWs, by variable CHW roles and responsibilities in SCD and other disease entities, and by variations in populations and communities served by CHWs. Herein, we use an evidence review and consensus to advance a common framework and uniform definition of the functions of CHWs, that differentiates CHW roles and responsibilities. We offer the justification for this differentiation, and for certification, credentialing, education, licensure, and payment for CHW service in the US.

Methods: To standardize the CHW intervention in the NHLBI-funded Start Healing in Patients with Hydroxyurea (SHIP-HU,R18HL112737) randomized controlled trial, we reviewed existing publications related to CHW efficacy. In order to synthesize and codify this efficacy evidence according to CHW occupational activities, we performed a rapid, narrative and tabular review of the clinical trials, meta-analyses and policy consensus reports summarizing over 200 CHW interventions to improve patient health status or care delivery. We built frequency tables to total how many mentions occurred of each of the specific roles, responsibilities, competencies, and behaviors utilized in these interventions, using a predetermined list built from a review of all the included interventions.

Results: (Evidence table too large to show) Findings of our review and consensus: 1) the more frequently mentioned intervention behaviors might be more important or generally required of all CHWs, whereas the rarer behaviors might either be more specialized or might be less often required of all CHWs; 2) there is strong evidence that CHWs are effective in providing culturally competent health education to individuals and groups, as well as health system navigation and care coordination; 3) there is not strong evidence for the efficacy of CHWs in the provision of direct services; 4) Coaching and social support were less commonly mentioned than the above services; 5)Neither outreach, case finding, nor advocacy were often mentioned in interventions, and; 6) Participation and evaluation in research was mentioned least in interventions. Our consensus recommendation based on these data is for a common framework or taxonomy consisting of four levels of CHW function: Peer Community Health Worker (PCHW), General Community Health Worker (GCHW), Clinical Community Health Worker (CCHW), and Health Navigator (HN).

Conclusions: Our proposed evidence-based CHW taxonomy standardizes definitions, provides categories into which to place workers, and delineates levels of service that, if tested, validated, and adopted, could allow national standards for CHW scope of practice, licensure, certification, and registration to practice.