Understanding the jargon of patient involvement

Don’t worry if you don’t understand the jargon! You should be given explanations of terms and abbreviations – and don’t be afraid to ask.

Rather than give you a lengthy glossary, we’ve focused on key terms and provided links.

P is for ‘Patient Involvement’

When we use the term ‘patient’, we mean not only patients but also carers and other family members. ‘Involvement’ can mean anything from giving feedback about your local dialysis unit to being a co-applicant in a clinical research study.

You will find that other organisations use the term ‘PPI‘ – for ‘patient and public involvement’. Essentially they are the same but these organisations will also include the general public in their activities.

INVOLVE – who are mostly concerned with research – defines PPI as:

An active partnership between patients and the public and researchers in the research process, rather than the use of people as ‘subjects’ of research. PPI is about doing research ‘with’ or ‘by’ people who use services rather than ‘to’, ‘about’ or ‘for’ them. This would include, for example, involvement in the choice of research topics, assisting in the design, advising on the research project or in carrying out the research. Visit the NIHR/INVOLVE jargon buster.

The NHS defines PPI as:

The active participation of. citizens, users and carers and their representatives in the development of healthcare services and as partners in their own healthcare. This means putting patients and public at the centre of all that the NHS does; encouraging the active participation of patients in their individual care and treatment; giving people a say in how national and local services are planned, developed, delivered and evaluated. The NHS doesn’t have a glossary but many Trusts have developed their own. Visit NHS England Participation Hub.

NICE (National Institute for Health and Care Excellence):

NICE has involved patients, service users, carers and the public, including voluntary, charitable and community organisations in its work since 1999. Visit NICE to read more about their approach to patient and public involvement.