Be clear about the service user role

Patient and public involvement (PPI) appears straightforward in principle, but in practice the term covers a complex and diverse set of activities. Before starting any involvement initiative, it is critical to have a clear idea of what the involvement will consist of in practical terms. What exactly will the service users do? This thinking needs to be done at the pre-protocol / protocol development stage - involvement in which the service users' roles are poorly thought out or vague, or which is tacked on to a project as an afterthought, is unlikely to succeed. It is advisable at this stage to gain some familiarity with user involvement as a concept and with the options for involvement: read through this and other webpages and resources, seek advice from INVOLVE and other PPI groups, and talk your ideas over with COMPASS PPI Lead and/or your Strand lead.

Involvement at different stages of the research process and 'levels' of involvement.

In your initial thinking about PPI, it might be useful to consider involvement at different stages of the research process and different 'levels' of influence.

Patient and public involvement does not mean that service users must be involved in every task or at every stage of the research process. Good involvement should enable service users to focus their energy on activities which utilise their experiences and strengths, and which maximise their contribution to the research study. Generally speaking, successful involvement starts early in the process - for example by involving service users in developing the research idea and in protocol writing. The INVOLVE publication "Involving the public in NHS, public health and social care research: Briefing Notes for Researchers" gives more detailed information about how to involve people at each of the different stages of the research process (see below).

'Levels' of influence means the degree of influence or control that service users will have in the research. The common model has three levels: consultation, collaboration, and user control. Consultation is when researchers ask service users for their views, usually on a specific issue or document - e.g. on a patient information leaflet - but do not necessarily adopt or utilise those views. Collaboration is when researchers and service users work together in partnership - e.g. in joint facilitation of a focus group - with the intention that both contributions are given equal weight. User-controlled research refers to research in which decision-making authority and overall control rests with service users rather than with professional researchers. This model is common in disability research, for example, but unusual in research in acute health conditions. Again, the INVOLVE publication "Involving the public in NHS, public health and social care research: Briefing Notes for Researchers" goes into more detail about these models.

Common forms of involvement

• Involvement in a research funding body or research board: An increasing number of health research funders involve patients and the public in setting the organisation's research funding strategy and priorities, in the award selection process, and in peer review of funded activities. See, for example, the Alzheimer's Society Quality Research in Dementia programme, or the NNHS R&D Health Technology Assessment Programme
• Involvement in a research project or programme Steering Group or Advisory Group: This is perhaps the most common form of involvement, in which (typically) two service users will be full members of a multi-professional group. An example is PPI in the NCRI Clinical Studies Groups, and NCRI Consumer Liaison Group which acts as a focus for this work
• Involvement as a 'co-researcher': This is seen as an optimum model of involvement by many commentators. In this model, service users work alongside professional researchers as full members of the research team, for example as a Research Associate or Research Fellow. In this role, service users are paid are paid at a professional rate for their work, often on a consultancy basis or a fixed-term contract basis. Reflective accounts of collaborative involvement are few and far between, but make interesting reading: click here to access an account of the collaborative TRUE project, which includes a useful list of 'lessons' for those considering collaborative research.