Information about health and care helps to improve individual care, speed up diagnosis, plan local services and enables research into new treatments. In May 2018, the strict rules about how this data can and cannot be used were strengthened through the General Data Protection Regulation.
The NHS is committed to keeping patient information safe and always being clear about how it is used. Patients will now be able to set national data opt-outs so that confidential health and care information about them will not be used for the purposes of planning and research if they so wish.
The new national data opt-out will provide a simple, accessible way for the public to opt out of their identifiable health and care information being used for reasons other than their individual care and treatment.
It is part of a vision to improve patients' trust and confidence in how data is looked after by the health and social care system and follows recommendations from the National Data Guardian, Dame Fiona Caldicott.
For the research community the national data opt-out has no impact where a patient has consented to participate in a research study and has agreed for their data to be used in that study. Nor will it affect studies that use anonymised data.
However, for researchers intending to access confidential patient information without consent in England and making an application through the Confidentiality Advisory Group (CAG), the standard condition of CAG’s advice is that the wishes of people who have withheld or withdrawn their consent (i.e. opted out) are respected.
Therefore, it has taken the position that it will advise that it is not in the public interest to override any opt-out in anything other than the most exceptional circumstances, e.g. serious public safety concerns.
Not all organisations such as hospitals will be able to implement the national opt-out immediately, but by 2020 it is expected that all health and care organisations will be following the policy.
More detailed information is available at: digital.nhs.uk/national-data-opt-out.