Recommendation 252

Anonymised data for managerial and regulatory purposes

Accepted
It is important that the appropriate steps are taken to enable properly anonymised data to be used for managerial and regulatory purposes.

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, 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, 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 CCGs and GPs 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 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 Care. 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
  • 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.

Update

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 2014 – 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.