The government is seeking views on proposals to introduce tighter controls and safeguards on the use of personal health and care data. They are proposing introducing a number of ‘Accredited Safe Havens’ that will have access to information from people's personal care records, under strict controls.
Read our joint response to the consultation, with the Health Foundation and the King’s Fund.
The NHS has information that spans whole populations and providers of care over time. This enables large amounts of world-leading research to take place, which helps understanding of how providers can improve services and patient outcomes.
Our work, and that of the Health Foundation and the King’s Fund, as voluntary sector organisations working to provide evidence in support of health and care services, makes a direct contribution to thinking on national and local health and care policies.
Information from the NHS is central to our research and analysis work, and hospital episodes statistics data has been invaluable to helping assess quality of care in the NHS.
We welcome the proposed moves to strengthen and clarify legislative requirements and good practice around access to the information. It is important that there is clarity around the protocol for sharing data, both for those in the service and the public. However, the tangible benefits of data linkage to patients, service users and the whole population must be clearly expressed.
Our response to consultation centres around:
- having appropriate strategies in place for accreditation of safe havens
- having a clear and consistent framework in place for the use of de-identified person-level data
- ensuring there is active and proportionate monitoring, not high volumes of regulations
- enabling novel research through data linkage that has the potential to improve health for all.
We must use this opportunity to build a robust, transparent system of data exchange that both protects confidentiality of individuals and makes use of the huge potential that de-identified person-level data have to improve care and health for all.
Also read our briefing on our use of person-level data.