Definitions

Summary statistics or visualisations, including unit-, hospital-, trust- or region-level statistics. Aggregate data can still contain identifiable data in certain circumstances, for example, where a small number of events/individuals is included.

Data that have been carefully selected or modified to prevent the identification of individual patients. Anonymisation means that individuals are not identifiable and cannot be re-identified by any means reasonably likely to be used (ICO).

Anonymisation may involve pseudonymisation but pseudonymisation alone is generally insufficient to render the data anonymised according to Information Commissioner’s Office guidelines.

As well as excluding any direct patient identifiers, anonymised data will typically also exclude dates, rare categories and extreme values, and may be limited in the number or combination of data items, or the precision at which data items are provided. Anonymised data may be perturbed through addition of ‘jitter’ (random noise).

In many cases it is not possible to produce an anonymised data extract that is suitable for research. The production of an anonymised data extract is not straightforward and quotes will reflect the amount of work involved in both the specification and production.

Information that both identifies, or is likely to identify, the patient and includes some information about their medical condition or treatment. Adapted from NHS Act 2006

A dataset (extract) containing one row per patient or admission.

Any data that could directly or indirectly facilitate the identification of individual patients. The presence of names, dates of birth, patient addresses or postcodes, or NHS Numbers, will be considered to render data patient identifiable; the presence of other combinations of fields in patient-level data, or small cell counts in aggregate data, may also be considered to render data patient identifiable.

Any information relating to an identifiable person; an identifiable person is one who can be identified, directly or indirectly, in particular by reference to an identifier such as a name, an identification number, location data, an online identifier or to one or more factors specific to that person. (ICO)

Data in which direct patient identifiers (names, NHS numbers, dates of birth, etc) have been replaced with pseudo-identifiers (random numbers or codes). The personal data can no longer be attributed to a specific data subject without the use of additional information, provided that such additional information is kept separately and is subject to technical and organisational measures to ensure that the personal data are not attributed to an identified or identifiable natural person.

Pseudonymised data may still be considered Patient Identifiable Data if an organisation receiving pseudonymised data also has access to the direct identifiers. Pseudonymised data is generally considered Personal Data, unless it has also been anonymised.

A project designed and conducted to produce information to inform delivery of best care. It aims to find out if healthcare is being provided in line with standards to inform care providers and patients about where a service is doing well, and where there could be improvements. (HDR UK)

Local quality improvement:

Analysis to improve the quality of care in your local unit or hospital specifically (i.e. not research producing generalisable results), typically in follow-up to information provided through clinical audit.

The attempt to derive generalisable new knowledge by addressing clearly defined questions with systematic and rigorous methods. (Department of Health and Social Care)

It may be beneficial to complete the following decision tool to determine if your proposed use of data would be considered research. https://www.hra-decisiontools.org.uk/research/ 

A project designed and conducted solely to define or judge current care. It seeks to assess a current service to assess how well the service is achieving its intended aims.  (HDR UK)

Bringing together two or more sources of information which relate to the same individual, event, institution or place. By combining the information it may be possible to identify relationships between factors which are not evident from the single sources. (NHS Health Economics Unit)

An agreement between ICNARC and the applicants establishing the purposes that the shared data will be used for and establishing the terms of use for the data.