REDSSA

Prof Keymanthri Moodley ended the series of presentations with yet another innovative approach to reaching communities via science /Healthcare communication. Prof Moodley's group REDSSA has produced an educational video and evaluated the impact of this educational video on the knowledge of South African patients undergoing renal dialysis regarding the use of their data. So far, the video is produced in English, Afrikaans and Xhosa- languages widely spoken in the Western Cape of South Africa. Prof. Moodley reiterated materials like this provide an opportunity for a waiver of consent. "An easy to understand educational video will enhance data literacy. This is important because people need to understand what they are consenting" - Prof. Moodley. DS-I Africa International Research Center of Excellence_IHVN #datascience #dsiafrica2024

A great start to the 4th DS-I Africa Consortium Meeting - the generative AI workshop, hosted by the REDSSA project and an organising committee was attended by over 80 delegates. Stimulating presentations and workshop discussions raised timely and controversial ethics questions around the use of generative AI in research. DS-I Africa INFORM Africa Hub Keymanthri Moodley Stuart Rennie Nezerith Cengiz Michelle S.

Data as scientific currency: Challenges experienced by researchers with sharing health data in sub-Saharan Africa Jyothi Chabilall, Qunita Brown, Nezerith Cengiz, Keymanthri Moodley PLOS Digital Health ➡️ https://lnkd.in/geS-E-2C #BioEthics #DataEthics Stellenbosch Medical Ethics & Law, Stellenbosch University, Faculty of Medicine and Health Sciences, UNC Center for Bioethics

Excited to share the latest publication from REDSSA: Trust as Moral Currency: Perspectives of Health Researchers in sub-Saharan Africa (SSA) on Strategies to Promote Equitable Data Sharing by Qunita Brown, Jyothi Chabilall, Nezerith Cengiz and Keymanthri Moodley Our paper highlights the key challenges around data sharing among health researchers in SSA and suggests strategies to foster collaboration, transparency and mutual respect in the region's research landscape. A special thanks to Prof. Keymanthri Moodley, our Principal Investigator and grant recipient, for her leadership. We invite you to read and engage with the findings! https://lnkd.in/dtY5Z7NA #HealthResearch #Ethics #DataSharing #SubSaharanAfrica

🔍 New Research on Multilingualism in Data-Intensive Research in Africa 🌍 Africa, with over 2,000 active languages, offers a rich but challenging landscape for data-intensive research. In multilingual contexts, informed consent isn't just a procedural formality—it's a complex process influenced by language, culture, and identity. Our latest research explores innovative ways to navigate these challenges, highlighting the potential of iconography, graphic elicitation, and multimedia formats to make informed consent more accessible and inclusive. These tools help bridge language barriers, improve comprehension, and empower participants, particularly in communities with lower literacy levels. Why it matters: - Enhances understanding and trust in research. - Promotes participant autonomy and ethical research practices. - Supports Research Ethics Committees (RECs) in making informed decisions. This study offers a fresh perspective on how we can make data-intensive research in Africa more ethical and inclusive. Read more to discover how we're shaping the future of informed consent in multilingual and diverse cultural settings. This is essential reading for anyone involved in research, ethics, or policy in Africa and beyond. Help spread the word by reading, sharing, and discussing! 📖 Check it out now and join the conversation on ethical research in diverse cultural contexts. https://lnkd.in/draq8puF Lillian Omutoko, George Rugare chingarande, Dr Marietjie Botes, Dr(Dr) Farayi Moyana (PhD)-Ortho-DENTIST,Bioethics / Health Law, Shenuka Singh, Walter Jaoko, Esperança Sevene, Tiwonge Kumwenda, Ama Edwin, Limbanazo Matandika Matandika, @Theresa Burgess, Keymanthri Moodley #Research #Ethics #InformedConsent #Multilingualism #Africa #DataScience #Inclusion #Innovation

I am pleased to share the Division of Medical Ethics and Law latest publication, "Trust as moral currency: Perspectives of health researchers in sub-Saharan Africa on strategies to promote equitable data sharing". In our study, we explore the challenges and potential solutions for data sharing among health researchers in sub-Saharan Africa (SSA). A big thank you to my amazing co-authors, Dr Jyothi Chabilall, Nezerith Cengiz and Prof Keymanthri Moodley for their valuable contributions, support and guidance during this process. Please have a read.

🚨 New Article Alert! 🚨 Cross-border data sharing through the lens of research ethics committee members in sub-Saharan Africa by Nezerith Cengiz, Siti Kabanda, Keymanthri Moodley. We're excited to announce the release of our latest article that explores the complex world of data sharing in research within sub-Saharan Africa! 🌍📊 In today's digital age, data-intensive research and AI are transforming how we handle information, but challenges like ambiguous regulations, conflicting interests, and technical expertise gaps are hindering successful data sharing. Traditional ethics oversight mechanisms struggle to address these challenges, especially in African contexts. Our study delves into: 🔹 REC members' experiences reviewing data sharing protocols 🔹 Perceptions of data transfer tools and agreements 🔹 Ethical, legal, and social challenges surrounding data sharing—confidentiality, consent, and more! We conducted in-depth interviews across the region, revealing a clear need for better awareness of data protection laws and training for REC members. 📢 If you're involved in research, ethics, or data science, this article offers crucial insights and recommendations for developing guidelines that promote ethical and efficient data sharing in Africa. Don’t miss out—read the full article and stay ahead of the conversation! https://lnkd.in/dMdAnxea #DataSharing #EthicsInResearch #AI #Africa #DigitalTransformation #ResearchEthics #DataProtection #Research

📢 New Article Alert! 🌍📊 Check out this insightful paper titled Private Commercial Companies Sharing Health-Relevant Consumer Data with Health Researchers in Sub-Saharan Africa: An Ethical Exploration by Stuart Rennie and a team of international experts (Sergio Litewka, Effy Vayena, George Rugare chingarande, Tiwonge Kumwenda, Nezerith Cengiz, Jerome Singh, Walter Jaoko, Keymanthri Moodley). This insightful paper dives deep into the ethical challenges surrounding data-sharing practices between commercial companies (like Google, Apple, and telecom firms) and health researchers in sub-Saharan Africa. The authors explore key issues that arose during the COVID-19 pandemic, when cellphone mobility data was shared to help manage the crisis, and call for more research to build strong ethics and governance frameworks in the region. If you're interested in health data ethics, governance, or digital health in Africa, this article is a must-read! 🔗https://lnkd.in/dTFNqT3e #HealthData #BigDataEthics #SubSaharanAfrica #DigitalHealth #COVID19 #DataGovernance

📢 New Article Alert! 🌍📊 Check out this insightful paper titled Private Commercial Companies Sharing Health-Relevant Consumer Data with Health Researchers in Sub-Saharan Africa: An Ethical Exploration by Stuart Rennie and a team of international experts (Sergio Litewka, Effy Vayena, George Rugare chingarande, Tiwonge Kumwenda, Nezerith Cengiz, Jerome Singh, Walter Jaoko, Keymanthri Moodley). This insightful paper dives deep into the ethical challenges surrounding data-sharing practices between commercial companies (like Google, Apple, and telecom firms) and health researchers in sub-Saharan Africa. The authors explore key issues that arose during the COVID-19 pandemic, when cellphone mobility data was shared to help manage the crisis, and call for more research to build strong ethics and governance frameworks in the region. If you're interested in health data ethics, governance, or digital health in Africa, this article is a must-read! 🔗https://lnkd.in/dTFNqT3e #HealthData #BigDataEthics #SubSaharanAfrica #DigitalHealth #COVID19 #DataGovernance

INFORM Africa CEIP holds its first community engagement activity-it focused on sensitization on the importance of data science to communities on the 5th of September, 2024. As part of our ongoing efforts to center communities in discussions about data sharing, ensure their active participation in research and data usage that directly affects them, while acknowledging the sovereignty of their contributions as equal partners in advancing health science and research, INFORM Africa Research has made significant strides toward creating a dedicated arm for community-related activities. This arm, known as the CEIP (Community Engagement Implementation Partners), was established in response to a need for more bidirectional engagement between communities and the research hub, while preserving the advisory role of the community advisory board (CAB). The INFORM Africa CEIP consists of a South African unit and a Nigerian unit. On September 5th, 2024 the INFORM Africa Nigerian CEIP leveraged the annual National Youth Cultural Congress organized by the Young Missionary Movement of Nigeria (YOMM), which brings together over 500 youth from all 36 states of Nigeria. This year's theme was "Youth Data Science Champions: Empowering Young Leaders on the Importance of Data Science." The CEIP worked closely with the INFORM Africa science communication unit to develop a drama script that was performed during the congress. The drama illustrated the journey of data from patient intake to its use in research, emphasizing the importance of consent, ethics, and community involvement in efforts to empower governments to better prepare for pandemics. The drama used relatable scenarios to highlight the value of utilizing data for public health benefits. In addition to the drama, the congress included a session dedicated to providing general information about data and data science, presented in a way that was accessible to community members and non-experts. Group discussions focused on addressing the challenges associated with data sharing at the community level. Participants identified the need to address stigma related to data sharing, using COVID-19 as a case study. They also offered recommendations on how to navigate these challenges effectively. The INFORM Africa hub would like to express its appreciation to our ELSI REDSSA, which allowed us to adapt some of its communication materials to the Nigerian context, providing valuable resources for the successful implementation of this activity. Sophia Osawe International Research Center of Excellence_IHVN DS-I Africa The National Institutes of Health Keymanthri Moodley