Impact of ART on the fertility of HIV-positive women in sub-Saharan Africa.

OBJECTIVE: Understanding the fertility of HIV-positive women is critical to estimating HIV epidemic trends from surveillance data and to planning resource needs and coverage of prevention of mother-to-child transmission services in sub-Saharan Africa. In the light of the considerable scale-up in antiretroviral therapy (ART) coverage over the last decade, we conducted a systematic review of the impact of ART on the fertility outcomes of HIV-positive women. METHODS: We searched Medline, Embase, Popline, PubMed and African Index Medicus. Studies were included if they were conducted in sub-Saharan Africa and provided estimates of fertility outcomes (live births or pregnancies) among women on ART relative to a comparison group. RESULTS: Of 2070 unique references, 18 published papers met all eligibility criteria. Comparisons fell into four categories: fertility of HIV-positive women relative to HIV-negative women; fertility of HIV-positive women on ART compared to those not yet on ART; fertility differences by duration on ART; and temporal trends in fertility among HIV-positive women. Evidence indicates that fertility increases after approximately the first year on ART and that while the fertility deficit of HIV-positive women is shrinking, their fertility remains below that of HIV-negative women. These findings, however, were based on limited data mostly during the period 2005-2010 when ART scaled up. CONCLUSIONS: Existing data are insufficient to characterise how ART has affected the fertility of HIV-positive women in sub-Saharan Africa. Improving evidence about fertility among women on ART is an urgent priority for planning HIV resource needs and understanding HIV epidemic trends. Alternative data sources such as antenatal clinic data, general population cohorts and population-based surveys can be harnessed to understand the issue

Disciplinary data publication guides

Many academic disciplines have very comprehensive standard for data publication and clear guidance from funding bodies and academic publishers. In other cases, whilst much good-quality general guidance exists, there is a lack of information available to researchers to help them decide which specific data elements should be shared. This is a particular issue for disciplines with very varied data types, such as engineering, and presents an unnecessary barrier to researchers wishing to meet funder expectations on data sharing. This article outlines a project to provide simple, visual, discipline-specific guidance on data publication, undertaken at the University of Bristol at the request of the Faculty of Engineering

Disciplinary Data Publication Guides

Many academic disciplines have very comprehensive standard for data publication and clear guidance from funding bodies and academic publishers. In other cases, whilst much good-quality general guidance exists, there is a lack of information available to researchers to help them decide which specific data elements should be shared. This is a particular issue for disciplines with very varied data types, such as engineering, and presents an unnecessary barrier to researchers wishing to meet funder expectations on data sharing. This article outlines a project to provide simple, visual, discipline-specific guidance on data publication, undertaken at the University of Bristol at the request of the Faculty of Engineering

Introducing Safe Access to Sensitive Data at the University of Bristol

The economic and societal benefits of making research data available for reuse and verification are now widely understood and accepted. However, there are some research studies, particularly those involving human participants, which face particular challenges in making their data openly available due to the sensitivities of the data. Despite its potential value to society this material is invariably kept locked away due to concerns over its inappropriate disclosure. The University of Bristol’s Research Data Service has developed the institutional infrastructure, including policies and procedures, required to safely grant access to sensitive research data in a way that is transparent, secure, sustainable and crucially, replicable by other institutions. This paper looks at the background and challenges faced by the institution in dealing with sensitive data, outlines the approach taken and some of the outstanding issues to be tackled. This paper looks at the background and challenges faced by the institution in dealing with sensitive data, outlines the approach taken and some of the outstanding issues to be tackled

GDPR in research - what does it mean for research institutions?

Collection of materials from the event "GDPR in research - what does it mean for research institutions?" which was hosted by TU Delft Library on 30 August 2018. The collection includes the following materials: The programme of the event The welcome slide All presentations from the event All authors and event organisers are listed in alphabetical order. Any questions about these materials should be addressed to [email protected]

AI3SD Video: Ethical data management – balancing individual privacy and public benefit

This talk will cover aspects of ethical data management, focussing on the key issues of participant consent, data minimisation, and data anonymisation, using examples from health sciences and engineering. Content within the talk aims to cover: big picture issues (societal benefits to data sharing versus individual right to privacy), relevant legislation (GDPR, DPA 2018 and FoIA 2000), what happens when things go wrong, managing risk via informed consent, data minimisation and anonymisation (formal, statistical and functional) and best practice guidelines and tools

Extending Support for Publishing Sensitive Research Data at the University of Bristol

The University of Bristol Research Data Service was set up in 2014 to provide support and training for academic staff and postgraduate researchers in all aspects of research data management. As part of this, the data.bris Research Data Repository was developed to provide a publication platform for research data generated at the University of Bristol. Initially launched in 2015 to provide open access to data, since 2017 it has also been possible to publish access-controlled datasets containing sensitive data via this platform. The vast majority (90%) of datasets published are openly accessible, but there has been steady demand for access-controlled release of datasets containing information that is ethically or commercially sensitive. These cases require careful management of additional risk: for example, where datasets contain information on human participants, balancing the risk of re-identification with the need to provide robust data that maximises research value through re-use. Many groups within the University of Bristol (for example, the Avon Longitudinal Study of Parents and Children) have extensive experience and expertise in this area, but it became apparent that there was a need to provide additional support for researchers who were not able to draw on the experience of these established groups. This practice paper describes the process of setting up a dedicated service to provide training and basic disclosure risk assessments in order to address these skills gaps, and outlines lessons learnt and future directions for the service