TY - JOUR
T1 - Communicating the ethical, legal, and social issues in neurobiobanking and stroke genomic research in Africa
T2 - Project intervention tools development and evaluation procedures
AU - Ojebuyi, Babatunde R.
AU - Afolami, Ibukun
AU - Adigun, Muyiwa
AU - Singh, Arti
AU - Jenkins, Carolyn
AU - Nichols, Michelle
AU - Wahab, Kolawole
AU - Bello, Abiodun
AU - Sarfo, Fred S.
AU - Owolabi, Lukman F.
AU - Musbahu, Rabiu
AU - Obiako, Reginald
AU - Akpalu, Albert
AU - Ogunronbi, Mayowa
AU - Olorunsogbon, Olorunyomi
AU - Calys-Tagoe, Benedict
AU - Adesina, Deborah
AU - Coleman, Nathaniel
AU - Sule, Abdullateef G.
AU - Mande, Aliyu
AU - Uthman, Muhammed
AU - Titiloye, Musibau
AU - Uvere, Ezinne
AU - Bukola, Odunola
AU - Laryea, Ruth
AU - Fakunle, Adekunle
AU - Adeleye, Osi
AU - Mensah, Nathaniel
AU - Yusuf, Jibril
AU - Adeniyi, Sunday
AU - Asibey, Shadrack
AU - Omotoso, Lanre
AU - Melikam, Lois
AU - Olujobi, Dorcas
AU - Oguike, Wisdom
AU - Akinyemi, Joshua
AU - Jegede, Ayodele
AU - Kalaria, Rajesh
AU - Ovbiagele, Bruce
AU - Owolabi, Mayowa
AU - Arulogun, Oyedunni
AU - Akinyemi, Rufus
N1 - Publisher Copyright:
© 2025
PY - 2025/8
Y1 - 2025/8
N2 - 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.
AB - 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.
KW - Community Engagement
KW - Community-Based Participatory Research, ELSI
KW - Health Literacy
KW - Neurobiobanking in Africa
KW - Persuasive Communication
KW - Precision Stroke Medicine
UR - https://www.scopus.com/pages/publications/105008532446
U2 - 10.1016/j.jstrokecerebrovasdis.2025.108378
DO - 10.1016/j.jstrokecerebrovasdis.2025.108378
M3 - Article
AN - SCOPUS:105008532446
SN - 1052-3057
VL - 34
JO - Journal of Stroke and Cerebrovascular Diseases
JF - Journal of Stroke and Cerebrovascular Diseases
IS - 8
M1 - 108378
ER -