How can we demonstrate trustworthiness when using sensitive data for research?
As an ex-researcher with many years’ experience of collecting data in old-fashioned ways, I am hugely excited by the new developments in data science that allow for faster and better gathering, storage and analysis of real-world data to address important social problems. Larger studies than I could ever have dreamt of when I began my career in the early 1980s are now feasible, thanks to advances in computing power and new analytical capabilities.
But one key aspect has not changed, and indeed is now more important than ever – the need to earn and maintain public trust in how their personal data are secured and used for public benefit, respecting their rights and protecting their privacy at all times.
Trained in social science and now retired from paid work, my professional career spanned academic health services research and health policy analysis, including senior roles at the University of Oxford, the King’s Fund and Picker Institute Europe. A common thread throughout my career has been the development and evaluation of ways to help people participate in decisions about their own care and in shaping policy developments. It was this interest that prompted me to apply to join the Programme Board of DARE UK as a Public Contributor.
I believe trusted research environments (TREs) offer the best hope for establishing secure data systems that can earn the confidence and trust of the public. The prospect of linking these into a joined-up research infrastructure to enable cross-sectoral studies is particularly exciting, but challenging too.
The public will expect to see clear, robust procedures that are well-communicated and well-understood by ordinary people, while also meeting the needs of researchers and data custodians. How the different components are managed and governed will be crucial. Data governance processes must be transparent, including robust techniques for protecting data privacy. And they must be open to independent public scrutiny, with opportunities for lay people to be directly involved in their oversight.
Getting this right and communicating it well will be no easy task. There are plenty of examples of how not to do it, leading to media scare stories and increased public suspicion of data analysts’ motives. We must ensure that the lessons from these calamities are learnt and acted upon.
It is excellent news that DARE UK has recognised the importance of open and transparent processes with public involvement from the outset. I am very much looking forward to working with the other public contributors to help achieve these challenging goals.