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The willingness to participate in biomedical research involving human beings in low- and middle-income countries: a systematic review.

ABSTRACT: OBJECTIVES:To systematically review reasons for the willingness to participate in biomedical human subjects research in low- and middle-income countries (LMICs). METHODS:Five databases were systematically searched for articles published between 2000 and 2017 containing the domain of 'human subjects research' in 'LMICs' and determinant 'reasons for (non)participation'. Reasons mentioned were extracted, ranked and results narratively described. RESULTS:Ninety-four articles were included, 44 qualitative and 50 mixed-methods studies. Altruism, personal health benefits, access to health care, monetary benefit, knowledge, social support and trust were the most important reasons for participation. Primary reasons for non-participation were safety concerns, inconvenience, stigmatisation, lack of social support, confidentiality concerns, physical pain, efficacy concerns and distrust. Stigmatisation was a major concern in relation to HIV research. Reasons were similar across different regions, gender, non-patient or patient participants and real or hypothetical study designs. CONCLUSIONS:Addressing factors that affect (non-)participation in the planning process and during the conduct of research may enhance voluntary consent to participation and reduce barriers for potential participants.

SUBMITTER: Browne JL

PROVIDER: S-EPMC6850431 | biostudies-literature | 2019 Mar

REPOSITORIES: biostudies-literature

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The willingness to participate in biomedical research involving human beings in low- and middle-income countries: a systematic review.

Browne Joyce L JL Rees Connie O CO van Delden Johannes J M JJM Agyepong Irene I Grobbee Diederick E DE Edwin Ama A Klipstein-Grobusch Kerstin K van der Graaf Rieke R

Tropical medicine & international health : TM & IH 20190108 3

<h4>Objectives</h4>To systematically review reasons for the willingness to participate in biomedical human subjects research in low- and middle-income countries (LMICs).<h4>Methods</h4>Five databases were systematically searched for articles published between 2000 and 2017 containing the domain of 'human subjects research' in 'LMICs' and determinant 'reasons for (non)participation'. Reasons mentioned were extracted, ranked and results narratively described.<h4>Results</h4>Ninety-four articles we ...[more]

PMID: 30565381

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Project description:Importance:Using social media to recruit participants is a common and cost-effective practice. Willingness to participate (WTP) in biomedical research is a function of trust in the scientific team, which is closely tied to the source of funding and institutional connections. Objective:To determine whether WTP and willingness to share social media data are associated with the type of research team and online recruitment platform. Design, Setting, and Participants:This mixed-methods longitudinal survey and qualitative study was conducted over 2 points (T1 and T2) using Amazon's Mechanical Turk (MTurk) platform. Participants were US adults aged 18 years or older who use at least 1 social media platform. Recruitment was stratified to match race/ethnicity proportions of the 2010 US Census. The volunteer sample consisted of 914 participants at T1, and 655 participants completed the follow-up survey 5 months later (T2). Main Outcomes and Measures:Outcomes were (1) past experience with online research and sharing social media data for research; (2) WTP in research advertised online; (3) WTP in a study sponsored by a pharmaceutical company, a university, or a federal agency; and (4) willingness to share social media data. Opinions were solicited regarding the European Union's General Data Protection Regulation statute, which came into effect between T1 and T2. Results:Of 914 participants completing the first survey (T1), 604 (66.1%) were aged 18 to 39 years and 494 (54.0%) were female. Of these, 655 participants (71.7%) responded at T2. While 680 participants (74.4%) indicated WTP in biomedical research, only 454 (49.3%) were willing to share their social media data. Participants were significantly less likely to participate in federally sponsored (odds ratio [OR], 0.58; 95% CI, 0.51-0.64; P?<?.001) or pharmaceutical company (OR, 0.59; 95% CI, 0.53-0.66; P?<?.001) research than university-led studies. They were also less likely to share their social medial data for federal (OR, 0.65; 95% CI, 0.58-0.72; P?<?.001) or pharmaceutical company (OR, 0.50; 95% CI, 0.44-0.56; P?<?.001) research compared with academic studies. Willingness to participate in pharmaceutical company-led research decreased 11.89% from T1 to T2 (OR for T2, 0.62; 95% CI, 0.54-0.77; P?<?.001). Reasons for WTP were interest in furthering science, financial incentives, trust in the organization, and data security. While 63.0% of respondents reported seeing new privacy policy emails related to the General Data Protection Regulation law, only 27.1% indicated this positively influenced their WTP. Thematic analysis of responses indicated that WTP may improve with stronger data security measures. Conclusions and Relevance:This study suggests that researchers may see reduced online research participation and data sharing, particularly for research conducted outside academia.

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.

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The willingness to participate in biomedical research involving human beings in low- and middle-income countries: a systematic review.

Publications

The willingness to participate in biomedical research involving human beings in low- and middle-income countries: a systematic review.

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