Definitions

Laboratory based research: Research done in a laboratory. A laboratory study may use special equipment and cells or animals to better understand the underlying biology of a condition, or to find out if a drug, procedure, or treatment is likely to be useful. It may also be a part of a clinical trial, such as when blood or other samples are collected. These may be used to measure the effect of a drug, procedure, or treatment on the body.

Patient and public involvement (PPI) in research: is research being carried out ‘with’ or ‘by’ patients and the public rather than ‘to’, ‘about’ or ‘for’ them. This includes, for example, patients and carers working with research funders to prioritise research, offering advice as members of a project steering group, commenting on and developing research materials and undertaking interviews with research participants. See here for more information.

Patient and public engagement: As distinct from involvement, engagement is when researchers talk to patients, carers and/or the public to raise awareness of or share learning from their research. See here for more information.

Patients and carers: People who use or have used health services and their carers, including people affected by a particular condition (i.e. people living with a condition, their family and friends).

PPI contributor: The organisations involved in this project use different terms to describe the patients, carers and members of the public who were involved in the studies we focused on. These terms include ‘volunteers’, ‘people affected by…’ (e.g. Parkinson’s or dementia), and ‘patients’. We have used the term ‘PPI contributors’ as an umbrella term to describe these people.

Many of the terms used when discussing patient and public involvement in research (including PPI) are contested, and no single term is acceptable to everyone.