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

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.

SUBMITTER: Janic A

PROVIDER: S-EPMC7196100 | biostudies-literature | 2020 Jun

REPOSITORIES: biostudies-literature

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

Janic Ana A Kimani Kahaki K Olembo Isabel I Dimaras Helen H

Ophthalmology and therapy 20200328 2

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 ...[more]

PMID: 32222906

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Project description:IntroductionPeople are increasingly mobile for numerous reasons, including healthcare. Patient mobility has vast implications for individuals, communities and whole populations and yet, to date, research on patient mobility has been quite limited. Only a small body of evidence exists on patient mobility between low-income and middle-income countries, instead having focused primarily on cross-border movement between high-income and low-income countries. In this paper, we present a protocol for examining this under-studied phenomenon.Methods and analysisWe propose to examine patient mobility between low-income and middle-income countries using a realist synthesis approach. Specifically, we aim to document why patients from low-income and middle-income countries cross international borders for healthcare, by identifying the mechanisms through which patients decide to cross-borders, and the contextual characteristics of domestic health markets that influence this choice. An underlying theory was established, based on the lead author's experience and a brief literature review, which will provide the basis to analyse search results in a subsequent paper. Search results will be obtained from databases (Ovid Medline, EMBASE, Scopus, EconLit, Web of Science) and the grey literature. An expert committee will be enlisted, prior to screening results, to review search results to ensure comprehensiveness. Based on this preliminary theory, we propose that, in some low-income and middle-income country markets, the interaction between demand-side and supply-side determinants results in market imperfections that, in turn, lead to patient movement across borders.Ethics and disseminationThe study does not involve primary research and, therefore, does not require formal ethical approval; we do, however, follow the relevant standards of utility, usefulness, feasibility, propriety, accuracy and accountability. The standards of realist and meta-narrative evidence synthesis (RAMESES) will be adhered to in reporting the findings of the review. Once completed, the findings of the resulting manuscript will be published in a peer-reviewed journal.Trial registration numberThis protocol has been registered with PROSPERO, registration number CRD42014014391.

Project description:BackgroundCommunity Engagement is an important ethical imperative in research. Although substantial research emphasizes its real value and strategic importance, much of the available literature focuses primarily on the success of community participation, with little emphasis given to specific community engagement processes, mechanisms and strategies in relation to intended outcomes in research environments. The systematic literature review's objective was to explore the nature of community engagement processes, strategies and approaches in health research settings in low- and middle-income countries.MethodsThe systematic literature review design was informed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. We searched for peer-reviewed, English-language literature published between January 2011 and December 2021 through three databases on the internet (PubMed, Web of Science and Google Scholar). The terms "community engagement," "community involvement," "participation," "research settings," and "low- and middle-income countries" were merged in the search.ResultsThe majority of publications [8/10] were led by authors from low- and middle-income countries, with many of them, [9/10] failing to continuously include important aspects of study quality. Even though consultation and information sessions were less participatory, articles were most likely to describe community engagement in these types of events. The articles covered a wide range of health issues, but the majority were concerned with infectious diseases such as malaria, human immunodeficiency virus, and tuberculosis, followed by studies on the environment and broader health factors. Articles were largely under-theorized.ConclusionsDespite the lack of theoretical underpinnings for various community engagement processes, strategies and approaches, community engagement in research settings was variable. Future studies should go deeper into community engagement theory, acknowledge the power dynamics underpin community engagement, and be more practical about the extent to which communities may participate.

Project description:BackgroundPatients with multiple long-term conditions requires understanding the existing care models to address their complex and multifaceted health needs. However, current literature lacks a comprehensive overview of the essential components, impacts, challenges, and facilitators of these care models, prompting this scoping review.MethodsA scoping review was conducted in accordance with the Preferred Reporting Items for Systematic Review and Meta-analysis Extension for Scoping Reviews guideline. Our search encompassed articles from PubMed, Web of Science, EMBASE, SCOPUS, and Google Scholar. The World Health Organization's health system framework was utilized to synthesis the findings. This framework comprises six building blocks (service delivery, health workforce, health information systems, access to essential medicines, financing, and leadership/governance) and eight key characteristics of good service delivery models (access, coverage, quality, safety, improved health, responsiveness, social and financial risk protection, and improved efficiency). Findings were synthesized qualitatively to identify components, impacts, barriers, and facilitators of care models.ResultsA care model represents various collective interventions in the healthcare delivery aimed at achieving desired outcomes. The names of these care models are derived from core activities or major responsibilities, involved healthcare teams, diseases conditions, eligible clients, purposes, and care settings. Notable care models include the Integrated, Collaborative, Integrated-Collaborative, Guided, Nurse-led, Geriatric, and Chronic care models, as well as All-inclusive Care Model for the Elderly, IMPACT clinic, and Geriatric Patient-Aligned Care Teams (GeriPACT). Other care models (include Care Management Plus, Value Stream Mapping, Preventive Home Visits, Transition Care, Self-Management, and Care Coordination) have supplemented the main ones. Care models improved quality of care (such as access, patient-centeredness, timeliness, safety, efficiency), cost of care, and quality of life for patients that were facilitated by presence of shared mission, system and function integration, availability of resources, and supportive tools.ConclusionsCare models were implemented for the purpose of enhancing quality of care, health outcomes, cost efficiency, and patient satisfaction by considering careful recruitment of eligible clients, appropriate selection of service delivery settings, and robust organizational arrangements involving leadership roles, healthcare teams, financial support, and health information systems. The distinct team compositions and their roles in service provision processes differentiate care models.

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

Publications

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

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