DARE UK welcomes findings of ministerial review into use of health data for research and analysis
DARE UK (Data and Analytics Research Environments UK) welcomes the government’s focus on delivering a more joined-up, efficient and trustworthy national data research infrastructure – in this case through the better, broader, safer use of NHS data for analysis and research. Health data is a critical component of the overall sensitive data research landscape and can provide valuable insights that can be utilised across other sensitive data research domains.
We find a number of the review’s recommendations are closely aligned with the emerging findings of our own discussions with stakeholders during this first ‘Design and Dialogue’ Phase of the DARE UK programme. In addition, we find from our engagement that many of the recommendations made are not only relevant to health data research, but are pertinent to the use of all types of sensitive data in research – including data related to education, welfare, the environment and more – as well as to the linkage of sensitive data across research domains.
We find a number of the summary recommendations resonate with some of the findings of DARE UK’s discussions with stakeholders in the broader sensitive data research landscape:
- Proactive transparency and meaningful public involvement and engagement are essential to demonstrating trustworthiness. Active efforts should be made to raise awareness of what sensitive data is being used in research, by who and what for.
- To ensure streamlined approaches, reduce the duplication of efforts and ultimately unlock increased public benefit at scale, there is a timely need for norms and standards (for example, accrediting environments that constitute a ‘trusted research environment’ (TRE)) that enable this to take place coherently across the sensitive data research landscape. All TREs need to have good security, privacy, and confidentiality risk management processes.
- Gaining secure access to data for research can be unduly slow and burdensome, and the public benefits of research can be negatively impacted as a result. Rationalisation – and standardisation – of approvals processes would enable the benefits of research using sensitive data to be realised in a more efficient way, particularly for complex research projects using multiple datasets from different data custodians. Enabling more streamlined access to data, whilst maintaining privacy and security, is therefore a clear priority.
- Building open ways of working and adopting code sharing best practice to leverage the best of academia, public sector, and industry is pivotal. This openness is at the heart of research and will further help address the community need for transparency.
- There are technological gaps that exist across the current data research infrastructure, highlighting the need for dedicated funding to support capability and capacity building, including the development of high-quality software skills. The need to develop career pathways that incorporate technical and data curation staff at all levels of data research is clear from our engagement. There is an urgent need to work together with academia, the public sector and industry to develop innovative funding and incentives to realise this.
What has become clear throughout our discussions with stakeholders and the community is that there must be a considered, careful balance to steering the transition into new ways of working across the data research landscape. This effort needs to be intelligently resourced within, and actively coordinated with, the data research community itself for such an evolution to be successful.
We look forward to working with the research community across the UK to continue to find better ways to deliver a more joined-up, efficient and trustworthy national data research infrastructure to enable even greater public benefit.