“Nothing for Us Without Us”: An Evaluation of Patient Engagement in an HIV Care Improvement Collaborative in the Caribbean

INTRODUCTION: Patient engagement is increasingly recognized as a key strategy to promote patient-centered care and accelerate health care improvements. Ensuring patient participation in improvement efforts is particularly important with stigmatized illnesses and marginalized populations. Despite the attention it has garnered, patient engagement is still not widely implemented and has not been well documented in global health literature. METHODS: We implemented a patient-engagement strategy to involve people living with HIV in quality improvement efforts. As part of the Caribbean Regional Quality Improvement Collaborative, quality improvement teams from Barbados (1 team), Jamaica (20 teams), Suriname (3 teams), and Trinidad and Tobago (2 teams) engaged health care providers from care facilities and people living with HIV to serve as community representatives (CRs) to lead the improvement efforts alongside them. This strategy was evaluated via a mixed method design that included 2 rounds of semistructured, in-depth interviews with patients and providers. RESULTS: Findings suggest that the patient engagement strategy had several key strengths: it promoted the collection, use, and appreciation of patient input to inform health care improvements at the facility level; facilitated the empowerment of CRs; enhanced mutual understanding and empathy between CRs and providers; and helped to dispel HIV stigma and discrimination in health care settings. Moreover, both health care providers and CRs reported that CR opinions and perspectives are as important as providers' and that CR participation in the improvement process was beneficial.