Janic Ana, Kimani Kahaki, Olembo Isabel, Dimaras Helen
Institute of Medical Sciences, University of Toronto, Toronto, ON, Canada.
Department of Ophthalmology and Vision Sciences, The Hospital for Sick Children, Toronto, ON, Canada.
Ophthalmol Ther. 2020 Jun;9(2):221-229. doi: 10.1007/s40123-020-00246-w. Epub 2020 Mar 28.
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.
患者参与研究的特点是临床医生、科学家以及患有某种疾病并有实际生活经历的人之间建立伙伴关系，他们共同开展和实施研究并传播研究结果。研究表明，患者参与研究能够产生更具影响力和相关性的研究结果。全球都需要针对低收入和中等收入国家（LMICs）开展高质量的情境化研究。患者参与研究可以满足这一需求，但在高收入国家，这仍是一种更常用的做法。在本文中，作者探讨了低收入和中等收入国家在患者参与研究方面特有的挑战和机遇。患者参与研究的限制包括卫生基础设施差距、社会经济地位、文化耻辱感以及角色不明确等问题。应对这些挑战的潜在解决方案包括战略性的国家和国际研究伙伴关系、消除耻辱感的举措，以及对参与患者研究的利益相关者进行宣传和培训。作者回顾了他们在加拿大和肯尼亚参与眼癌研究的患者参与经历，并得到了其他资源匮乏地区患者参与研究的证据支持，从而为低收入和中等收入国家的患者参与研究提供了一个路线图。
