An open letter from Matt Westmore, Chief Executive of the Health Research Authority and Tony Calland, Chair of the Confidentiality Advisory Group

The Health Research Authority (HRA) and Confidentiality Advisory Group (CAG) strongly support both the appropriate use of patient data for planning and research in general and the General Practice Data for Planning and Research data collection.

The use of data for service improvement and research saves lives - either in the short term through planning the delivery of health services or the medium and longer term through research where your data is used to develop better treatments. Never has this been so apparent as over the last eighteen months where the NHS and the research community have been at the forefront of our response to the pandemic – the use of patient data has been critical to that.

We also know that your trust is a privilege. It must be earned; it is easy to lose and difficult to regain once lost. Above all, it must not be taken for granted.

To maintain that trust, the NHS must collect, secure and use your data appropriately and with your knowledge and understanding of why and how it is used. The UK has many safeguards to ensure data is being used appropriately, and the Health Research Authority and the Confidentiality Advisory Group provide some of those safeguards.

Our role is to protect your interests, and your data, when it is used in health and adult social care research. On rare occasions researchers want to use data in cases where it would be very difficult for contact people individually to ask for their consent. The Confidentiality Advisory Group makes sure that there is no other way to do the research, that the research is important enough, and that people have the opportunity to opt-out of its use for this purpose. Some of this type of research uses data that NHS Digital holds. The Confidentiality Advisory Group has been in contact with NHS Digital.

We think to maintain trust you need to have enough information so you can understand what data is collected and how it will be used, even if you can’t be identified. We also think that it is important that you have the choice to stop your data being used if that’s important to you.

This is why we commend the decision to listen to patients, health care professionals and the public and pause the roll out. Using this time to engage with patients, doctors and others will help to correct any misunderstandings and address legitimate concerns. Above all HRA and CAG believe it is vital to maintain the trust of patients and the public in the NHS and research.