Question to the Department of Health and Social Care:

To ask the Secretary of State for Health, what progress has been made on aiding medical research using NHS data gathering.

The Government is committed to ensuring the health and care system in England realises the full benefits of sharing data in a safe, secure and legal way and is developing a simple, accessible way for patients to opt out of sharing their data for reasons other than their individual care and treatment.

Recognising that sharing information and data offers immense potential to improve the National Health Service and social care system, unlock new treatments and medical breakthroughs, and improve our and others lives, we are keen to ensure these benefits are understood by the public.

It is crucial, if data and information is to be used effectively to support better health and care outcomes that the public has trust and confidence that there are strong safeguards in place to protect their data from inappropriate use.

The Government has committed to put the role of the National Data Guardian on a statutory footing. This function will work to ensure that citizens’ confidential information is safeguarded securely whilst being used legally and transparently.

The Government is also committed to supporting innovation and improvement through the safe and secure use of data from the health and care system. NHS Digital is the trusted national provider of high-quality information, data and IT systems for health and social care, with a statutory duty in the Health and Social Care Act 2012, to assure the quality of all the data it collects, publishes and makes available, under strict controls, to the research community.

At present a wide range of data are collected from the NHS to support a range of secondary uses including within the research community. Recognising the value and importance of this data, NHS Digital has made a number of commitments to the Life Sciences Industrial Strategy. These include leading, alongside NHS England and Health Data Research UK, the development of Local Care Record exemplars and regional Digital Innovation hubs. The hubs will create controlled environments for real-world clinical studies and the comprehensive evaluation of new innovations so that patients can benefit from scientific breakthroughs much faster.

In addition, NHS Digital has set out national standards and approaches for data and interoperability and sponsors the Professional Records Standards Body to define the standards needed for good care records which are the foundation of strong data for research.

To support researchers understanding of the data access environment, NHS Digital is also rolling out a series of Roadshows for Researchers which will take place throughout the winter.