Empowering and supporting African adolescents
The United Nations Sustainable Development Goals (SDGs) have refocused development goals from single objectives to a wide range of integrated targets. To address these goals, governments and policymakers need timely and rigorous evidence, which can be a challenge given the high cost and time needed to set up and run large-scale research initiatives. The Accelerate Hub, which is a research partnership between the Universities of Cape Town and Oxford University is funded under the United Kingdom Research and Innovation (UKRI) Global Challenges Research Fund (GCRF). It was developed to generate research in order to help policymakers identify which cost-effective, scalable solutions can be provided to adolescents, to help them reach targets across a number of the sustainable development goals.
To achieve this goal, the Accelerate Hub fosters partnerships between governments, international agencies, non-governmental organisations, donors, academics, and the adolescents themselves. It also means doing research differently, working across disciplines and beyond single aims. This comes with a range of data challenges, from point of collection to point of publication and dissemination.
“Using a variety of methodologies from narrative storytelling, participatory research, and quasi-experimental analyses of observational data, to trials and economic analyses, the Accelerate Hub aims to generate evidence that empowers and supports African adolescents, helping them thrive across a number of the different sustainable development goals.”
“The Accelerate Hub is home to over a dozen individual studies,” explains Dr. Elona Toska, the UCT principal investigator (PI) of the Accelerate Hub. “Each of these comes with its own unique research goals, questions, and methodologies which translate into specialised data-processes and associated challenges. There are also overarching issues of data governance and legal compliance that apply across the hub. Fortunately, UCT eResearch, working across departments at UCT, has been able to provide support at both the micro and the macro level.”
Bringing data ownership home to Africa
The Accelerate Hub has developed from a long-standing collaboration between UCT and Oxford universities on adolescent health and development research. Originally, the data was stored at Oxford as it was the main recipient for funding for this portfolio of research.
“But as the research progressed, we had to think more critically about data and its regulatory environments,” says Toska. “The project PI’s had always envisioned a power shift in the work from a northern institution like Oxford to an equitable partnership with a southern institution such as UCT, part of this involving the storage of the data at UCT.”
This is where the collaboration with UCT eResearch really began with questions around hardware and how to set up the server according to the requirements of the project.
Data governance
The Accelerate Hub is funded by several United Kingdom (UK) and European Union (EU) grants, including the UKRI GCRF. This means research, carried out by the Hub, needs to comply with both the EU’s General Data Protection Regulation (GDPR) and the legal framework of the country in which the research is being conducted.
For example, within the Accelerate Hub, UCT eResearch provided a great deal of support to one particular study called HEY BABY (Helping Empower Youth Brought up in Adversity with their Babies and Young children). The research was undertaken in the Eastern Cape province of South Africa and needed to comply with the Protection of Personal Information Act (POPIA) of South Africa which came into effect on 01 July 2020.
“The HEY BABY study tries to understand adolescent parenting and figure out what we can do to support adolescent parents,” explains Toska.
“It involves the collection of both qualitative and quantitative data, but within each of these are very diverse data sources including letters and posters made by the adolescents, recorded phone calls or questionnaires completed with adolescent mothers, child observational data, and patient file data (with consent).The UCT eResearch team helped us to navigate this regulatory minefield.”
There will be more data-governance challenges down the road where the Accelerate Hub team will rely on the UCT eResearch partnership. One example is in meeting the requirements of a data-protection impact assessment, to help review their data, and structure the data-management system on the storage server.
“We need to answer questions like who has access to the raw (non-anonymised) data and how can we ensure its integrity, but also facilitate access to that data so it can be cleaned, analysed and used to improve the lives of adolescents,” says Toska.
They also need additional support for data-sharing agreements between partners, not only academic partners but also those of NGOs and governments. Here the UCT eResearch collaboration with the Research Contracts & Innovation Office (RC&I) is integral, as RC&I provides the legal insight while UCT eResearch offers expertise on what infrastructure and support is available at the institution.
Empowering the Accelerate team
The scale of data collected under the Accelerate Hub umbrella meant that, beyond the partnership with UCT eResearch, the Accelerate team needed in-house data-management expertise.
“With just the HEY BABY project collecting data from over eight different sources, and the Accelerate Hub being home to more than a dozen studies, it was apparent that we were quickly going to be in over our heads in managing the data needed to meet our research goals,” says Toska.
“We need to answer questions like who has access to the raw (non-anonymised) data and how can we ensure its integrity, but also facilitate access to that data so it can be cleaned, analysed and used to improve the lives of adolescents.”
The UCT eResearch team provided support to create an in-house data steward post. They worked with the Accelerate Hub team to restructure one of their funds to create this post, helped to review the job description, and provided support to the individual eventually hired for the post.
There are also plans in place for training the Accelerate team to help the research group better understand the different platforms which support good research practice, including reproducible research and data management.
“The work with the Accelerate Hub has been an excellent example of the importance of close collaboration between research groups and the various professional and administrative support staff (PASS) departments at the university,” says UCT eResearch Director, Dr. Dale Peters.
“As compliance regulations become more complex, particularly as collaborations cross borders, an ongoing relationship between the researchers themselves and the PASS staff is needed.”
This collaboration showcases the necessary adjustments and processes that UCT’s eResearch, Library Services, and Research Contracts and Innovation are developing in response to the needs of UCT’s research community.
“Key to this research and collaboration,” says Peters, “is how researchers across disciplines and institutions are partnering with PASS staff across departments, to tackle the challenges laid before us by the sustainable development goals.”