ADR UK has responded to a new inquiry by the House of Commons Science and Technology Committee: ‘The right to privacy: digital data’. This inquiry is exploring the ways data is currently shared and used across government, the public sector, and industry, as well as the need to balance people's privacy with the need for effective data use.
Sharing data across and between public bodies and other organisations has the potential to enable many social, environmental and economic benefits. This includes improving healthcare services and facilitating insights which progress research and innovation. Sharing data also allows researchers to spot patterns and improve our understanding of important topics that benefit the public, like medicine.
However, sharing data also raises important questions regarding privacy and ownership of personal data. Risks posed by data sharing include putting individuals' rights to privacy in jeopardy or losing the public’s trust in data security due to poor data governance. Our response touched on possible solutions to these challenges.
We commented on five topics suggested by the Science and Technology Committee. Our thoughts are as follows:
- Sharing data benefits evidence-based policymaking across the full range of policy areas including crime and justice, health and wellbeing, children and young people, and housing and communities.
- There should be a more holistic approach to how health data is utilised for research in England. We should build on existing good practice such as the Digital Economy Act accredited trusted research environments model which allows researchers to access data securely, without the need for data to be released.
- ADR UK are committed to reassuring the public that their data is secure by ensuring all our trusted research environments adhere to the ‘Five Safes’. We also embed public engagement throughout our work, through panels, steering committees, workshops, and by following our five public engagement principles.
- Complete anonymisation of data may not always be appropriate or possible if data is to have utility for research purposes. If de-identified information is accessed via a trusted research environment that is accredited under a suitable process and, as such, meets all the required security standards, then the de-identified data can be considered functionally anonymised. This is possible through a combination of the actions taken to create the de-identified dataset, and the environment in which the dataset is accessed.
- Existing governance arrangements in England for decision-making around the creation of linked administrative and health datasets, to support research in the public good, are not currently fit for purpose. ADR UK would like to collaborate with NHS Digital and other related parties on the development of a framework to facilitate better decision-making, similar to those already in place in Wales and Scotland.
Overall, we welcome the House of Commons Science and Technology Committee seeking insight into data sharing. We also welcome the specific focus on health, since understanding the social and environmental determinants of health is one of our key research themes and an area in which data sharing can improve lives. We are looking forward to seeing our feedback reflected in future strategies.
Read ADR UK's full response