PCIE can sometimes be referred to as PPI (Patient and Public Involvement) or PPIE (Patient and Public Involvement and Engagement). At the ARC KSS we think it’s important to see people as individuals, rather than as patients or service users. Secondly, we want to recognise the important role that communities play locally. This is reflected in our preferred term of 'PCIE', which stands for Public and Community Involvement and Engagement.
Both the terms ‘involvement’ and ‘engagement’, and others such as ‘participation’, are used to describe ways of interacting with the public and are sometimes used interchangeably. The ARC KSS PCIE Strategy uses these definitions:
- When using the term Public, we include: patients, potential patients, carers and people who use health and social care services, people from organisations that represent people who use services, or members of the public with an interest in research. These public members are distinct from those who have a professional role in health or social care services.
Members of the public may be referred to as:
- Lay members
- Public Members
- Public Advisors
- Public Contributors
- Experts by Experience
- Lay advisors
- Patient partners
- Lived experience advisors
The label doesn’t really matter, it is hearing their voice in your research that is important.
- We use the term Community to define a social unit with commonality such as norms, religion, values, customs, situation or identity (e.g. gender, ethnicity, health condition). Communities may share a sense of place situated in a geographical area or in a virtual space through communication platforms.
- Involvement is defined as research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. It does not refer to the recruitment of patients or members of the public as participants in research. Members of the public can be actively involved in research projects or in the research organisation itself. Examples of involvement in research are: identifying research priorities, as members of a project advisory or steering group, commenting and developing patient information leaflets or other research materials.
- Engagement is providing the opportunity to share information and knowledge about research, in order to explore, debate and shape research. It is by definition a two‐way process, involving interaction and listening, with the goal of generating mutual benefit (National Coordinating Centre for Public Engagement). Examples are: researchers getting to know their communities, events where members of the public are invited to find out about research, raising awareness of research through social media, and news media.
- Participation is not defined in the strategy, but we use this to refer to people taking part in a research study, e.g. answering survey questions. However, if you work with community organisations, you may also hear the term 'Participation' used to describe involvement and engagement work.
Involvement, engagement and participation are often linked and, although they are different, they complement each other.
And what about Co-Production…?
Co-production refers to a process whereby there is joint ownership of a piece of research, where members of the public are recognised as having skills and knowledge of equal value with which to design and deliver applied research.
Co-production is not simply ‘good PCIE’, nor is high quality PCIE co-production. However, they do share some common features and both are highly regarded and valued approaches to working with the public and communities. The ARC KSS Co-production and PCIE teams work together to foster best practice in both endeavours, to ensure high quality research and service provision. More information on co-production and relevant resources can be found in ARC KSS’ ‘A Guide to Co-production for Researchers, Services and Commissioners’.
Not all research or service development will be suited to using co-production, but all projects can benefit from some PCIE. There is always scope to involve members of the public, so that their voices are heard.