Patients and service users
Digital transformation brings huge opportunities for citizens. Safer care, quicker diagnosis and more personalised services and treatments will be delivered by making sure the right information is available at the right time to everyone involved in a person’s care.
We want to demonstrate that the health and care system is a trustworthy data custodian, and we will do this in five ways:
- keep data safe and secure
- be open about how data is used
- ensure fair terms from data partnerships
- give the public a bigger say in how data is used
- improve the public’s access to their own data.
Our vision: the public have confidence in how their data will be handled, and are happy for their data to be used to improve the care that they and others receive.
As someone using health and/or adult social care services, I and those who support me will have:
- confidence that my data is being handled in a way that is safe and secure
- a good understanding of how my data is being used, both for my individual care and for improving population health, planning, innovation and research
- greater access to my own health and care data, and the power to choose how it is used
Key commitments to achieve this include:
- we will improve access to GP records in the NHS App by giving patients access to their latest health information (November 2022) and provide patients with the ability to digitally request historic coded information including diagnosis, blood test results and immunisations (from December 2023)
- to work with expert partners and the public to implement secure data environments as a default across the NHS
- the undertaking of in-depth engagement with the public and professionals, through forums such as focus groups with seldom heard communities, and citizens juries on topics and questions that are high priority or particularly complex, including how we deliver secure data environments and the future of the national data opt-out, and working closely with regions to understand local needs (from July 2022)
- the development of a standard for public engagement, setting out best practice for health and care organisations, and any other body using NHS data, to engage with the public and staff on data programmes and issues (by December 2022)
- to work to ensure that we have a simple opt-out system in place that provides clarity and choice, giving patients confidence and ensuring data continues to support the functioning of the health and care system (from July 2022).