Lessons for Patient Engagement in Research in Low- and Middle-Income Countries

Abstract

Abstract Patient engagement in research is marked by partnership between clinicians, scientists, and people with lived experience of a disease, who jointly develop and implement research and disseminate results. Patient engagement in research has been shown to lead to more impactful and relevant findings. There is a global need for quality research contextualized for low- and middle-income countries (LMICs). Patient involvement in research could address this need, yet it remains a practice more commonly employed in high income countries. In this paper, the authors explore LMIC-specific challenges and opportunities for patient engagement in research. Limitations to patient engagement in research include gaps in health infrastructure, socioeconomic status, cultural stigma, and uncertain roles. Potential solutions to address these challenges include strategic national and international research partnerships, initiatives to combat stigma, and sensitization and training of stakeholders in patient engagement in research. Reflecting on their patient engagement experience with eye cancer research in Canada and Kenya, and supported by evidence of patient engagement in other low-resource settings, the authors provide a roadmap for patient engagement in research in LMICs.

Keywords

• Global health
• Kenya
• Low- and middle-income countries
• Patient engagement
• Patient-partnered research
• Retinoblastoma