How can we ensure public data is shared in the public interest?
Case study: Confidentiality Advisory Group
The Health Research Authority’s Confidentiality Advisory Group (CAG) is an independent body that provides expert advice on the use of confidential patient information in the public interest. The CAG requires researchers proposing to use patient data to involve the public to understand public interest, the acceptability of the data processing, and how patients should be given opportunities to opt-out of the research. The CAG supports accountability by publishing its minutes and registers of requests.
This case study is part of a series exploring how public sector organisations involve the public, workers and civil society in decisions about data and AI, and some of the consequences when they do not. Read more about our work on public involvement in public sector data and AI.
Medical researchers can either ask patients to sign up to a study, or directly access patient data held by NHS bodies. To do the latter, researchers have to get permission from the Health Research Authority (HRA). The HRA gets advice from a Research Ethics Committee (REC), which looks at whether the proposed research is ethical, and the Confidentiality Advisory Group (CAG), which considers whether the public interest of the project is sufficient to justify a breach of confidentiality, and whether the opt-out mechanisms that patients have are sufficient.
Working out whether something is in the public interest (or acceptable to the public) and how to best provide opt-out mechanisms to relevant patients requires public input. There is also evidence that public involvement means research is more relevant and better communicated. While the CAG includes lay members, it cannot provide a sufficient lived experience voice for all types of research. It therefore requires researchers to carry out proportionate, high quality, public involvement. The CAG expects public involvement to be embedded throughout the research, targeted to relevant members of the public and accessible to them. The CAG also looks for evidence that public involvement is meaningful and has helped shape the research.
To build public confidence and promote accountability, the CAG operates in a very transparent way. It publishes future dates and minutes and registers of all applications it has approved. It is responsive, meeting up to twice a month and providing decisions within a maximum of 60 days (or 30 days where an application shares common issues with previous projects). The HRA provides a set of best practice resources for carrying out public involvement, and the CAG provides guidance on what it looks for.
