This report addresses the question of what more can be done to build trust in how the NHS and social care services look after people’s confidential data and use it appropriately.
Health and social care services have always depended on trust. As health and social care become increasingly integrated, and as more data is held on computers (and computers are becoming more powerful), it is becoming ever more important that people understand when and how information is shared, how privacy is protected, and how sharing information benefits them and others.
This report focuses particularly on two aspects of people’s trust. Firstly, it looks at whether data security is good enough. Secondly, the report looks at the basis upon which information is shared.
- proposes that people should be able to opt out from personal confidential data being used beyond their own direct care.
- recommends that the proposed consent/opt-out model should be put out to consultation. It is recommended that alongside the consultation there should be further testing to find out whether people would prefer to have more than one choice, and to develop the wording of the question.
- recommends that the Government should consider introducing stronger sanctions to protect anonymised data.
Beyond an understanding that patient records are used to help deliver direct personal care, the public’s knowledge about how health and social care data is collected, protected, and used within the health and social care system is limited. It is therefore clear that future communications cannot make any assumptions about existing knowledge of data processes and uses, and that there is a role for all health and social care professionals to support public understanding.
There is a high degree of trust in NHS organisations to look after people’s data and for health professionals to use it appropriately. Work is now needed to raise public understanding of the variety of organisations and agencies involved in delivering health and social care and to extend public trust across this system. The proposals set out in this report were designed to assure the public that their personal confidential data is secure and empower them to make informed choices about the use of that data.
As this report notes throughout, use of data is essential to providing excellent care, to running a world-class health and social care system, to improving the quality of care and to support lifechanging research. These important public benefits rely on data being shared with the relevant health and social care professionals and organisations. However, this sharing should not discount the interests of the individual – personal confidential data must always be protected properly, and shared on the basis of public trust.
APO Editor's note:
This resource was originally published on 1 July 2016 and updated on 12 July 2017.