Section 5: Patient & Public Involvement (PPI)

Patient and public involvement (or PPI for short) means actively working in partnership with patients and members of the public to plan, design, manage and carry out research and evaluation. This means that the research for a specific intervention or programme that is intended to improve or prove something for a patient or member of the public needs to be ‘with’ or ‘by’ them rather than ‘to’ or ‘for’ them.

The Involvement part of PPI is different to participation (e.g., taking part in research) and engagement (e.g., research dissemination).

Involving patients and the public in research and evaluation strategies ensures that research design and management is relevant, and that its outcomes and outputs fit the needs of the intended audience (usually that of patients or members of the public).

PPI should be central to any Research & Evaluation intervention or programme and therefore should sit centrally within each and every stage of its strategy. Not just because it is the right thing to do – input from lay people provides researchers with real life insight into what patients and the public ‘want’ and ‘need’, ultimately saving time and resources on getting it right for the user.

The majority of research funding streams require applicants to clearly demonstrate how they plan to involve patients and the public in their research process and will require clear justification for not involving them. PPI is also now mandatory for many peer-reviewed journal submissions.

In other words by neglecting PPI you may be putting funding opportunities and dissemination outputs at risk.

Patients and members of the public can and should be involved at each and every stage of the research process. This can include a wide range of approaches from bringing the public and patients into the central team or attending pre-existing groups to discuss the intervention or programme, raising issues and questions. Some examples include:

• Identifying and prioritising (e.g. hold an initial meeting with patients and members of the public to discuss the best approaches)
• Designing & Managing (e.g. attend a pre-existing PPI groups to discuss design of data collection with a follow-up meeting on amendments or next phase designs)
• Patient & Public Researchers (e.g. conducting data collection and analysis)
• Dissemination (e.g. co-authorship on publications and presentations)
• Implementing (e.g. involved in rolling out an intervention or programme)
• Monitoring & Awareness (e.g. gather views on and improve PPI impacts)

TEC Cymru recommend using a number of different approaches to involving patients and the public in research and evaluation, including having central PPI members such patients with lived experience as well as an ad hoc approach such as attending pre-existing PPI groups and reaching out to existing contacts to capture feedback as and when needed.