Jargon Buster

Jargon Buster

We know that research language can be complex, and we want to make sure that everyone understands the information on this website. That's why, with valuable input from our Lived Experience Advisory Panel (LEAP) and following guidance from the Public Engagement in Data Research Initiative (PEDRI), we've created this Jargon Buster.

It explains the technical terms used in our projects and will be regularly updated to ensure it remains comprehensive and helpful.

Some of the definitions are taken directly from PEDRI's Good Practice Standards and these are indicated within the list.

Anonymisation: Anonymisation is the way in which you turn personal data - data about an identifiable person or persons - into anonymous information which does not relate to an identifiable person. This process allows data to be shared and used safely while preserving the privacy of people represented within the data. Sources: Information Commissioner's Office anonymisation guidance and PEDRI Good Practice Standards

CBT / iCBT: Cognitive behavioural therapy (CBT) is a talking therapy that aims to help people manage their problems by changing the way they think and behave. Internet-enabled (also known as internet-based or internet-delivered) cognitive behavioural therapy (iCBT) is when this therapy is delivered over the internet via video calls or mobile text-based chats.

De-identification: De-identification is the process of removing personal information from data, creating 'de-identified data'  While this data no longer contains details that directly identify a person, it could potentially - in the absence of other technical and organisational controls - be linked to other information to enable the re-identification of able information. Sources: Information Commissioner's Office anonymisation guidance and PEDRI Good Practice Standards

Pseudonymisation: Pseudonymisation is a technique that replaces information that directly identifies people, or de-couples that information from the resulting dataset. For example, it may involve replacing names or other identifiers (which are easily attributed to people) with a reference number. It is still possible to identify people within the data by using the additional information held separately. Source: Information Commissioner's Office anonymisation guidance

Real-world data: Real-world data is information captured routinely in the course of interactions with organisations for the purpose of delivering the service(s) offered by those organisations. For example, during a patient’s admission to hospital the details of the patient’s stay are captured together with any diagnoses made and procedures delivered. This is in contrast to bespoke data collected during clinical trials which are recorded specifically for evaluating the interventions being compared in the trial. This bespoke data recorded in clinical trials may not provide a full picture of:

• how treatments are delivered outside of highly-controlled clinical trials

• how well treatments work amongst a diverse range of people than those included in clinical trials