What constitutes adequate legal protection for the collection, use and sharing of mobility and location data in health care in South Africa?

Mobile phone technology has been a catalyst that has added an innovative dimension in health care and created new opportunities for digital health services. These digital devices can be viewed as an extension of the person using them due to the deluge of personal information that can be collected and stored on them. Data collected on mobile phones are used extensively in health services and research. Personal, mobility and location data are constantly collected. The unique mobile phone architecture provides for an easy flow of data between various role players such as application developers and phone manufacturers. The collection, storage and sharing of personal information on mobile phones elicit various legal questions relating to the protection of privacy, consent, liability and the accountability of stakeholders such as health insurance providers, hospital groups and national departments of health

The regulation of health data sharing in Africa:a comparative study

The sharing of health data is an essential component in the provision of healthcare, in medical research, and disease surveillance. Health data sharing is subject to regulatory frameworks that vary across jurisdictions. In Africa, numerous factors complicate the regulation of health data sharing, including technological, motivational, economic, and political barriers, as well as ethical and legal challenges. This comparative study examines the regulation of health data sharing in Africa by comparing and contrasting the legal and policy frameworks of five African countries. The study identifies gaps and inconsistencies in the current regulatory regimes and provides recommendations for improving the regulation of health data sharing in Africa

Data sharing governance in sub-Saharan Africa during public health emergencies: Gaps and guidance

While the COVID-19 pandemic has captured the attention of the global community since the end of 2019, deadly health pandemics are not new to Africa. Tuberculosis (TB), malaria and human immunodeficiency virus (HIV) count amongst other serious diseases that have had a catastrophic impact on the African continent. Effective responses to such pandemics require high-quality, comprehensive data sets that can inform policymaking and enhance healthcare decision-making. While data is driving the information economy in the 21st century, the scarcity in Africa of carefully curated, large epidemiologic data sources and analytical capacity to rapidly identify and understand emerging infectious diseases poses a major challenge to mounting a time-sensitive response to unfolding pandemics. Data access, sharing and transfer between countries are crucial to effectively managing current and future health pandemics. Data access and sharing, however, raises questions about personal privacy, the adequacy of governance mechanisms to regulate cross-border data flows, and ethical issues relating to the collection and use of personal data in the interests of public health. Sub-Saharan Africa’s most research-intensive countries are characterised by diverse data management and privacy governance frameworks. Such regional variance can impede time-sensitive data sharing and highlights the need for urgent governance reforms to facilitate effective decision-making in response to rapidly evolving public health threats. Significance: We explore governance considerations that ought to apply to the collection, transfer, and use of data in public health emergencies. Specifically, we provide an overview of the prevailing data sharing governance landscape in selected African countries. In doing so, we identify limitations and gaps that impede effective data collation, sharing and analysis. This work could find utility amongst a range of stakeholders, including bioinformaticians, epidemiologists, artificial intelligence coders, and government decision-makers. While this work focuses primarily on an African context, the issues explored are of universal concern and therefore of relevance to a broader international audience

What constitutes adequate legal protection for the collection, use and sharing of mobility and location data in health care in South Africa?

Mobile phone technology has been a catalyst that has added an innovative dimension in health care and created new opportunities for digital health services. These digital devices can be viewed as an extension of the person using them due to the deluge of personal information that can be collected and stored on them. Data collected on mobile phones are used extensively in health services and research. Personal, mobility and location data are constantly collected. The unique mobile phone architecture provides for an easy flow of data between various role players such as application developers and phone manufacturers. The collection, storage and sharing of personal information on mobile phones elicit various legal questions relating to the protection of privacy, consent, liability and the accountability of stakeholders such as health insurance providers, hospital groups and national departments of health. SIGNIFICANCE : We analyse the major legal concerns of mobility and location data collection and processing through mobile phones in the context of health care and provide recommendations to develop data protection guidelines that are built on the principles of lawfulness, fairness and transparency. The issues explored are of relevance in an African context and to a broader international audiencehttp://www.sajs.co.zaam2024Public LawNon

Data sharing governance in sub-Saharan Africa during public health emergencies:gaps and guidance

While the COVID-19 pandemic has captured the attention of the global community since the end of 2019, deadly health pandemics are not new to Africa. Tuberculosis (TB), malaria and human immunodeficiency virus (HIV) count amongst other serious diseases that have had a catastrophic impact on the African continent. Effective responses to such pandemics require high-quality, comprehensive data sets that can inform policymaking and enhance healthcare decision-making. While data is driving the information economy in the 21st century, the scarcity in Africa of carefully curated, large epidemiologic data sources and analytical capacity to rapidly identify and understand emerging infectious diseases poses a major challenge to mounting a time-sensitive response to unfolding pandemics. Data access, sharing and transfer between countries are crucial to effectively managing current and future health pandemics. Data access and sharing, however, raises questions about personal privacy, the adequacy of governance mechanisms to regulate cross-border data flows, and ethical issues relating to the collection and use of personal data in the interests of public health. Sub-Saharan Africa’s most research-intensive countries are characterised by diverse data management and privacy governance frameworks. Such regional variance can impede time-sensitive data sharing and highlights the need for urgent governance reforms to facilitate effective decision-making in response to rapidly evolving public health threats.</p

The regulation of health data sharing in Africa : a comparative study

The sharing of health data is an essential component in the provision of healthcare, in medical research, and disease surveillance. Health data sharing is subject to regulatory frameworks that vary across jurisdictions. In Africa, numerous factors complicate the regulation of health data sharing, including technological, motivational, economic, and political barriers, as well as ethical and legal challenges. This comparative study examines the regulation of health data sharing in Africa by comparing and contrasting the legal and policy frameworks of five African countries. The study identifies gaps and inconsistencies in the current regulatory regimes and provides recommendations for improving the regulation of health data sharing in Africa.The US National Institute of Mental Health of the US National Institutes of Health.http://jlb.oxfordjournals.orghj2024Public LawNon

A response to Thaldar et al. (2023) : data sharing governance in sub-Saharan Africa during public health emergencies

SIGNIFICANCE : We elucidate the misinterpretations raised by Thaldar et al. (S Afr J Sci. 2023;119(11/12), Art. #15722) on our previous publication in which we outlined the data sharing governance landscape in selected African countries.US National Institutes of Health.http://www.sajs.co.zahj2023Public LawNon

Exploring perspectives of research ethics committee members on the governance of big data in sub-Saharan Africa

Interest in the governance of big data is growing exponentially. However, finding the right balance between making large volumes of data accessible, and safeguarding privacy, preventing data misuse, determining authorship and protecting intellectual property remain challenging. In sub-Saharan Africa (SSA), research ethics committees (RECs) play an important role in reviewing data-intense research protocols. However, this regulatory role must be embedded in a context of robust governance. There is currently a paucity of published literature on how big data are regulated in SSA and if the capacity to review protocols is sufficient. The aim of this study was to provide a broad overview of REC members’ awareness and perceptions of big data governance in SSA. A descriptive cross-sectional survey was conducted from April to July 2022. We invited 300 REC members to participate in our online survey via Research Electronic Data Capture (REDCap). A total of 140 REC members, representing 34 SSA countries, completed the online survey. Awareness of data governance laws, policies and guidelines was variable across the subcontinent. A quarter of respondents (25%) indicated that national regulations on the transborder flow of research data are inadequate. Institutional policies on research data protection were also regarded as being inadequate. Most respondents (64%) believed that they lacked experience in reviewing data-intense protocols. Data governance and regulation in SSA need to be strengthened at both national and institutional levels. There is a strong need for capacity development in the review of data-intense research protocols on the subcontinent. Significance: This is the first empirical survey in SSA in which awareness and perspectives of REC members have been explored specifically relating to the review of data-intense research protocols. Big data have raised new ethics and legal challenges, and this survey provides a broad overview of these challenges in SSA. Our study confirms that knowledge and awareness of legislative frameworks and ethics guidance in SSA vary considerably where big data are concerned. The research results could be useful for a range of stakeholders, including RECs, data scientists, researchers, research and academic institutions, government decisionmakers and artificial intelligence (AI) coders