IJPDS International Journal of Population Data Science

In the pursuit of more efficient and coordinated research for public benefit, the data research community is increasingly turning to Trusted Research Environments (TREs) – secure computing spaces that grant authorised researchers access to vital data. These environments operate under the umbrella of Data Access Agreements (DAAs), which establish the terms of data utilisation within these secure confines. However, such agreements are often unclear and complex, and this can lead to delays to research initiatives while the contract is reviewed.

In collaboration with members of Health Data Research UK’s Public Advisory Board, the Pan UK Data Governance Steering Group (a working group of the UK Health Data Research Alliance) has developed a set of principles representing the building blocks of a standardised DAA template. These recommendations, published in the International Journal of Population Data Science (IJPDS), aim to build public trust and provide clarity of obligations for those hosting a TRE and those requesting access to it.

In providing a standardised DAA template, the aim is to streamline and accelerate the trustworthy use of data for research by tackling delays caused by contract reviews and negotiations. Adoption of the template serves a dual purpose: it not only facilitates more efficient and timely data research but also fosters a sense of trust amongst data owners and the public. This trust stems from the assurance that data access is not only legally grounded and for the greater public good, but also underscored by robust security and protection measures.

The principles and standardised DAA template are intended for non-commercial and commercial data access and apply to all kinds of data sets that are securely accessed in TREs, from health and non-health sources, which may provide insights into the association between socioeconomic factors and health outcomes. The DAA is also designed to be flexible to accommodate specific differences between TREs, for example, differing approaches for things such as intellectual property rights or researcher training requirements.

Author Rachel Brophy said ‘We have never appreciated the importance of utilising data for public benefit more than throughout the COVID-19 pandemic, yet data research continues to be delayed by complex and divergent contracting arrangements. Widespread adoption of these principles governing data access will not only help build public trust but also improve the efficiency of research, ultimately enabling discoveries that will improve and save lives.’

This highly collaborative piece of work emphasises the importance of working together to achieve streamlining, standardisation, and transparency in data access, and highlights opportunities for further collaboration at the national and international level.

Click the link to access the DAA template  TRE Data access agreement template | Zenodo

 

Click here to read the full open access article

Rachel Brophy, Information and Research Governance Manager, Health Data Research UK (HDR UK)

Brophy, R., Bellavia, E., Bluemink, M. G., Evans, K., Hashimi, M., Macaulay, Y., McNamara, E., Noble, A., Quattroni, P., Rudczenko, A., Morris, A. D., Smith, C. and Boyd, A. (2023) “Towards a standardised cross-sectoral data access agreement template for research: a core set of principles for data access within trusted research environments”, International Journal of Population Data Science, 8(4). doi: 10.23889/ijpds.v8i4.2169.