What does patient and public involvement mean?

A variety of terms is used to describe individuals who get involved in the field of research, including consumers, service users, participants, volunteers and lay people.

For clarity and consistency, UKCRN uses the term ‘patient/public involvement’ (PPI), and takes ‘patient/public representatives’ to include the following:

• Patients
• Carers
• Family members/friends of those involved in clinical research
• Members of the public who may be targeted by clinical and health research programmes
• Research organisations that represent patients’/the publics’ interests
• Individuals/groups that are affected by health or clinical research issues.

Involvement

The needs and views of patient/public representatives are important to UKCRN, and PPI across all UKCRN activities is fundamental to improving clinical research in the UK. For this reason, active and meaningful involvement matters. UKCRN wants to involve patient/public representatives in all its work, as well as involving a range of healthcare professionals including clinicians, researchers and academics. A national strategy for PPI is being developed to ensure such involvement occurs from the onset.

Further details will be available in due course.

People in Research

The People in Research website aims to help members of the public make contact with organisations that want to actively involve them in clinical research. Public involvement in clinical research is about patients and members of the public getting actively involved in the research process, such as helping to decide what is researched, how the research should be carried out and what should be done. The heart of the website is a searchable database of information about organisations or groups that sometimes look for members of the public to get actively involved in their work. It has been developed by the UK Clinical Research Collaboration, INVOLVE and others.