Communicating The Ethical, Legal, And Social Issues In Neurobiobanking And Stroke Genomic Research In Africa: Project Intervention Tools Development And Evaluation Procedures

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 Assess ment Tool (PEMAT), and semi-structured interview questions based on Willis’ Cognitive Interviewing Tech niques 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 stake holders, define policy objectives and desired behaviour change, and develop appropriate persuasive communi cation strategies and tools for community engagement.