Access to data

Accepted.
For electronic patient records to become the core information used to improve care, services and to inform research as outlined in The Power of Information (Department of Health, May 2012) these records must be anonymised or used securely to protect patients’ confidential information. Data also need to become more available, linked appropriately and of good quality. The Health and Social Care Information Centre set out its objectives for 2013–14 in its publication Informing Better Care (2013), in which it stated that it would take over data collection responsibilities from other bodies, extend its data linkage services and consolidate its position as a national source of indicators.
A range of work has been taken forward already across the system to ensure that identifiable data is used appropriately. This includes, for example:
• the Health and Social Care Information Centre has set a new anonymisation standard, from April 2013, that provides an approach and a set of standard tools to anonymise information to ensure that, as far as it is reasonably practicable, information published does not identify individuals;
• recent guidance published by NHS England Information Governance and Risk Stratification: Advice and Options for clinical commissioning groups and GP116 (June 2013) advises clinical commissioning groups on the use of data for predictive modeling purposes. Further approvals are being put in place to ensure that the new commissioning organisations and structures are using Patient Confidential Data appropriately;
• the Health and Social Care Information Centre publications process allows pre-publication access to many of its statistics, mostly in aggregated form, for management purposes;
• the Health and Social Care Information Centre’s Hospital Episode Statistics data service and linkage service facilitate the provision of data for managerial and regulatory purposes; and
• the use of anonymised data by the Clinical Practice Research Datalink, working with the Health and Social Care Information Centre, in research using linked anonymised data, to improve and safeguard public health. The Government’s response to the Caldicott Review (Department of Health, September 2013) concluded that, ‘…the research community has established many good practices and developed robust solutions to enable access to detailed patient information while ensuring that confidentiality is protected’.
We will continue to support this area and, specifically:
• the Health and Social Care Information Centre will publish its Code of Practice for the Management of Confidential Information later this year outlining principles for managing confidential data that all NHS bodies must comply with. This will build on A Guide to Confidentiality in Health and Social Care118 (Health and Social Care Information Centre, September 2013). The Code will also clarify patients’ rights to know how data about them is being used and to object to the Health and Social Care Information Centre having access to that data should they wish to as outlined in Information: To share or Not to Share (Department of Health, March 2013);
• the Health and Social Care Information Centre, commissioned by NHS England, will make information from Care.Data available to commissioners and providers, in anonymised or aggregated form, to support the development of integrated services for patients; and

The Health and Social Information Centre has now been merged into NHS England, who is now the statutory custodian for health and care data for England. We enable the health and social care system to make best use of its data to improve healthcare outcomes, efficiency of services and the impact of research, while safeguarding the privacy of the people whose data we hold.

A range of statistical publications, dashboards and open datasets, continue to enable important insight across health and care, informing national and local decisions. Open data is data that can be used and shared by anyone, for any purpose. We make this data publicly available to improve transparency in health and care.

Latest guidance on anonymisation is available on the NHS England website (last updated 2022).

The Department consulted on Protecting personal health and care data in June 2014.The consultation outlines proposals to improve how an individual’s health and care data is shared across the National Health Service and the social care system.

The consultation set out proposals for new regulations to place strong controls around the disclosure of data which might potentially identify individuals by the Health and Social Care Information Centre and accredited safe havens. The consultation also covered proposals for new regulations to address concerns about restrictions on the sharing of confidential personal information with NHS and social care case managers, who need to have access to this information in relation to those for whom they are responsible for arranging health or care services. The consultation closed on 08 August 2015 - the Department of Health is considering the responses received as the government decides how to respond to the consultation. A consultation on the draft Code of Practice for the Management of Confidential Information closed on 18 August 2014. The Health and Social Care Information Centre will be considering the responses to the consultation in the formation of the Code of Practice.

Availability of the Care.data programme to commissioners and providers was put on hold in order for there to be a longer period of engagement and consultation and discussion about access to data about individuals. Engagement work is ongoing, and as a result no data has yet been made available through Care.data programme.

This recommendation was accepted by the Government.

In the January 2014 Hard Truths report , the Government referred to the Health and Social Care Information Centre setting a new anonymisation standard from April 2013; guidance published by NHS England in June 2013 advising clinical commissioning groups on the use of data for predictive modelling processes; the Health and Social Care Information Centre allowing pre-publication access to its statistics for management purposes; and the use of anonymised data by the Clinical Practice Research Datalink to improve and safeguard to public health.

In December 2014, the Health and Social Care Information Centre published a Code of Practice on Confidential Information.