Communicating the ethical, legal, and social issues in neurobiobanking and stroke genomic research in Africa: Project intervention tools development and evaluation procedures

IF 2 4区医学 Q3 NEUROSCIENCES

Journal of Stroke & Cerebrovascular Diseases Pub Date : 2025-06-14 DOI:10.1016/j.jstrokecerebrovasdis.2025.108378

Babatunde R. Ojebuyi PhD , Ibukun Afolami PhD , Muyiwa Adigun PhD , Arti Singh MD , Carolyn Jenkins DrPH , Michelle Nichols PhD, RN , Kolawole Wahab MD, FMCP , Abiodun Bello MD , Fred S. Sarfo MBChB, PhD , Lukman F. Owolabi MD, FMCP , Rabiu Musbahu MD , Reginald Obiako MD, FWACP , Albert Akpalu MBChB, FWACP , Mayowa Ogunronbi MPH , Olorunyomi Olorunsogbon MPH , Benedict Calys-Tagoe MD , Deborah Adesina RN , Nathaniel Coleman MPH , Abdullateef G. Sule MD , Aliyu Mande HND , Rufus Akinyemi MD, PhD

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引用次数: 0

Abstract

Background and Aim

Issues concerning appropriate Community Engagement (CE) and communication of research outcomes with stakeholders have received the attention of scholars in different sub-fields of clinical research. However, given its novel nature, especially in Sub-Saharan Africa, CE addressing the ethical, legal, and social implications (ELSI) of neurobiobanking and stroke genomic research has not received much scholarly attention. Therefore, this study was designed as a pioneering effort to report the procedures for developing and evaluating intervention tools for the CE component of the African Neurobiobank for Precision Stroke Medicine ELSI Project.

Methods

A community-based participatory research design was adopted. The intervention tools we developed include general advocacy, educative, and training videos focusing on neurobiobanking, stroke genomics and precision stroke medicine in Africa; infographics; and a policy brief. An adapted Doak and Doak’s Suitability Assessment Measure (SAM), the Agency for Healthcare Research and Quality (AHRQ) Patient Education Materials Assessment Tool (PEMAT), and semi-structured interview questions based on Willis’ Cognitive Interviewing Techniques were used to evaluate the suitability, actionability, understandability and cultural appropriateness of the tools.

Results

PEMAT mean percentage scores of 71.4 % for actionability and 82.4 % for understandability, and a SAM suitability score of 67.9 % were reported for the videos. Identified weaknesses captured in seven thematic areas after assessment analysis by experts and community members guided the final refinement of the tools.

Conclusion

The overall reviewers’ reports and evaluation scores indicate that the intervention tools are generally suitable for community deployment in sub-Saharan Africa. Clinical researchers must partner with key stakeholders, define policy objectives and desired behaviour change, and develop appropriate persuasive communication strategies and tools for community engagement.

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沟通非洲神经生物银行和中风基因组研究中的伦理、法律和社会问题：项目干预工具开发和评估程序。

背景与目的：关于适当的社区参与（CE）和与利益相关者交流研究成果的问题已经受到临床研究不同子领域学者的关注。然而，鉴于其新颖的性质，特别是在撒哈拉以南非洲，神经生物银行和中风基因组研究的伦理、法律和社会影响（ELSI）的CE并没有得到太多的学术关注。因此，本研究旨在作为一项开创性的努力，报告非洲精确中风医学ELSI项目神经生物库CE部分干预工具的开发和评估程序。方法：采用社区参与式研究设计。我们开发的干预工具包括一般宣传、教育和培训视频，重点是非洲的神经生物银行、中风基因组学和精确中风医学；信息图;还有一份政策简报。采用Doak和Doak的适用性评估量表（SAM）、医疗保健研究和质量机构（AHRQ）患者教育材料评估工具（PEMAT）和基于Willis认知访谈技术的半结构化访谈问题来评估这些工具的适用性、可操作性、可理解性和文化适宜性。结果：视频的可操作性和可理解性的PEMAT平均百分比得分为71.4%，可理解性得分为82.4%，SAM适宜性得分为67.9%。经过专家和社区成员的评估分析，确定了七个专题领域的弱点，指导了工具的最终完善。结论：总体审稿人的报告和评价分数表明，干预工具一般适合撒哈拉以南非洲地区的社区部署。临床研究人员必须与关键的利益相关者合作，确定政策目标和期望的行为改变，并为社区参与制定适当的有说服力的沟通策略和工具。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Journal of Stroke & Cerebrovascular Diseases Medicine-Surgery

CiteScore

5.00

自引率

4.00%

发文量

583

审稿时长

62 days

期刊介绍： The Journal of Stroke & Cerebrovascular Diseases publishes original papers on basic and clinical science related to the fields of stroke and cerebrovascular diseases. The Journal also features review articles, controversies, methods and technical notes, selected case reports and other original articles of special nature. Its editorial mission is to focus on prevention and repair of cerebrovascular disease. Clinical papers emphasize medical and surgical aspects of stroke, clinical trials and design, epidemiology, stroke care delivery systems and outcomes, imaging sciences and rehabilitation of stroke. The Journal will be of special interest to specialists involved in caring for patients with cerebrovascular disease, including neurologists, neurosurgeons and cardiologists.