Glossary

Statistical data about several individuals that has been combined to show general trends or values without identifying individuals within the data.

The process of rendering data into a form which does not identify individuals and where there is little or no risk of identification (identification is not likely to take place).

An audit is an official internal or external examination of an organisation. See clinical audit and independent audit’.

A senior person responsible for protecting the confidentiality of patient and service user information and enabling appropriate information sharing

A care pathway is anticipated care placed in an appropriate time frame, written and agreed by a multi-disciplinary team. It has locally agreed standards based on evidence, where available, to help a patient with a specific condition or diagnosis move progressively through the clinical treatment.

Care records are personal records. They comprise documentary and other records concerning an individual (whether living or dead) who can be identified from them and relating

• to the individual’s physical or mental health
• to spiritual counselling or assistance given or to be given to the individual; or
• to counselling or assistance given or to be given to the individual, for the purposes of their personal welfare, by any voluntary organisation or by any individual who by reason of the individual’s office or occupation has responsibilities for their personal welfare; or by an order of a court has responsibilities for the individual’s supervision

This record may be held electronically or in a paper file or a combination of both.

The health and/or social care professionals and staff that directly provide or support care to an individual.

An individual who provides unpaid care to a patient or service user, most commonly a member of their family or friend. For paid workers, the term ‘care worker’ should be used.

People under 18.

Clinical audit is a tool for improving practice, patient care or services provided. It is used to measure current practice and care against a set of explicit standards or criteria, identify areas for improvement, make changes to practice and re-audit to ensure that improvement has been achieved. The findings of the clinical audit provide evidence of the quality of practice and care.

Commissioning is essentially buying care in line with available resources to ensure that services meet the needs of the population. The process of commissioning includes assessing the needs of the population, selecting service providers and ensuring that these services are safe, effective, people-centred and of high quality. Commissioners are responsible for commissioning services.

See personal confidential data 

The approval or agreement for something to happen after consideration. For consent to be legally valid, the individual must be informed, must have the capacity to make the decision in question and must give consent voluntarily. This means individuals should know and understand how their information is to be used and shared (there should be ‘no surprises’) and they should understand the implications of their decision, particularly where refusing to allow information to be shared is likely to affect the care they receive. This applies to both explicit and implied consent.

Qualitative or quantitative statements or numbers that are (or are assumed to be) factual. Data may be raw or primary data (for example) direct from measurement), or derivative of primary data, but are not yet the product of analysis or interpretation other than calculation.

Any failure to meet the requirements of the Data Protection Act, unlawful disclosure or misuse of personal confidential data and an inappropriate invasion of people’s privacy.

A person (individual or organisation) who determines the purposes for which and the manner in which any personal confidential data are or will be processed. Data controllers must ensure that any processing of personal data for which they are responsible complies with the DPA.

A breach of principle 7 of the DPA or an inappropriate breaking of confidentiality.

In relation to personal data, means any person (other than an employee of the data controller) who processes the data on behalf of the data controller. Data processors are not directly subject to the Data Protection Act. But the Information Commissioner recommends that organisations should choose data processors carefully and have in place effective means of monitoring, reviewing and auditing their processing and a written contract (detailing the information governance requirements) must be in place to ensure compliance with principle 7 of the Data Protection Act.

Information which identifies an individual has been removed, but there is still some risk of re-identification.

A clinical, social or public health activity concerned with the prevention, investigation and treatment of illness and the alleviation of suffering of individuals. It includes supporting individuals’ ability to function and improve their participation in life and society. It includes the assurance of safe and high quality care and treatment through local audit, the management of untoward or adverse incidents, person satisfaction including measurement of outcomes undertaken by one or more registered and regulated health or social care professionals and their team with whom the individual has a legitimate relationship for their care.

Genetic information is information about the genotype, or heritable characteristics of individuals obtained by direct analysis of DNA, or by other biochemical testing. Genetic information in itself is not always identifiable.

A public body which exercises functions in connection with the provision of health services or of adult social care in England. 

See personal confidential data. 

An item of data, which by itself or in combination with other identifiers enables an individual to be identified. Examples include: A guide to confidentiality in health and social care: references

1. Names.

2. All geographic subdivisions smaller than a state, including street address, city, county, precinct, postcode, and their equivalent geographical codes, except for the initial four digits of a postcode if, according to the current publicly available data from the Office for National Statistics and/or the Information Commissioner’s Office:

a. The geographic unit formed by combining all postcodes with the same four initial digits contains more than 20,000 people.

b. The initial three digits of a postcode for all such geographic units containing 20,000 or fewer people are changed to 000.

3. All elements of dates (except year) for dates directly related to an individual, including birth date, admission date, discharge date, date of death; and all ages over 89 and all elements of dates (including year) indicative of such age, except that such ages and elements may be aggregated into a single category of age 90 or older.

4. Telephone numbers.

5. Facsimile numbers.

6. Electronic mail addresses.

7. National Insurance numbers.

8. NHS number and medical record numbers.

9. Health plan beneficiary numbers.

10. Account numbers.

11. Certificate/licence numbers.

12. Vehicle identifiers and serial numbers, including licence plate numbers.

13. Device identifiers and serial numbers.

14. Web universal resource locators (URLs).

15. Internet protocol (IP) address numbers.

16. Biometric identifiers, including fingerprints and voiceprints.

17. Full-face photographic images and any comparable images.

18. Any other unique identifying number, characteristic, or code, unless otherwise permitted by the Information Commissioner’s Office.

An audit conducted by an external and therefore independent auditor to provide greater public assurance. See audit and clinical audit.

Activities that contribute to the overall provision of services to a population as a whole or a group of patients with a particular condition, but which fall outside the scope of direct care. It covers health services management, preventative medicine, and medical research.

Information is the “output of some process that summarises, interprets or otherwise represents data to convey meaning.” Data becomes information when it is combined in ways that have the potential to reveal patterns in the phenomenon.

How organisations manage the way information and data are handled within the health and social care system in England. It covers the collection, use, access and decommissioning as well as requirements and standards organisations and their suppliers need to achieve to fulfil the obligations that information is handled legally, securely, efficiently, effectively and in a manner which maintains public trust.

The legal relationship that exists between an individual and the health and social care professionals and staff providing or supporting their care.

The merging of information or data from two or more sources with the object of consolidating facts concerning an individual or an event that are not available in any separate record.

This term describes personal information about identified or identifiable individuals, which should be kept private or secret. For the purposes of this guide ‘personal’ includes the DPA definition of personal data, but it is adapted to include dead as well as living people. ‘Confidential’ includes both information ‘given in confidence’ and ‘that which is owed a duty of confidence’ and is adapted to include ‘sensitive’ as defined in the Data Protection Act. Used interchangeably with ‘confidential’ in this document.

Data which relate to a living individual who can be identified from those data, or from those data and other information which is in the possession of, or is likely to come into the possession of, the data controller, and includes any expression of opinion about the individual and any indication of the intentions of the data controller or any other person in respect of the individual.

A systematic and comprehensive process for determining the privacy, confidentiality and security risks associated with the collection, use and disclosure for personal data prior to the introduction of or a change to a policy, process or procedure.

Processing in relation to information or data means obtaining, recording or holding the information or data or carrying out any operation or set of operations on the information or data, including:

• organisation, adaptation or alteration of the information or data;
• retrieval, consultation or use of the information or data;
• disclosure of the information or data by transmission, dissemination or otherwise making available; or

alignment, combination, blocking, erasure or destruction of the information or data

Individuals are distinguished in a data set by using a unique identifier, which does not reveal their ‘real world’ identity.

This applies when the holder of the information believes that the public good that would be served by sharing the information outweighs both the obligation of confidentiality owed to the individual and the public good of protecting trust in a confidential service.

The process of analysing data or combining it with other data with the result that individuals become identifiable. Also known as ‘de-anonymisation’.

The process of protecting children and vulnerable adults from abuse or neglect, preventing impairment of their health and development, and ensuring they live in circumstances consistent with the provision of safe and effective care. It enables children to have optimum life chances and enter adulthood successfully and adults to retain independence, well being and choice and to access their human right to live a life that is free from abuse and neglect.

Data that identifies a living individual consisting of information as to his or her: racial or ethnic origin, political opinions, religious beliefs or other beliefs of a similar nature, membership of a trade union, physical or mental health or condition, sexual life, convictions, legal proceedings against the individual or allegations of offences committed by the individual. See also personal confidential data. 

An individual receiving social care services.