What is impact?

Patient and Public Involvement and Engagement (PPIE) impact is defined as the changes, benefits and learning gained from the insights and experiences of patients, carers and the public when working in partnership with researchers and others involved in health improvement initiatives.

How public contributors can improve impact

Public contributors can help you in many ways. They can:

• Review early draft research proposals from a public, patient or service user perspective. Is it ethical? Will it make a difference to patients, carers or society? Is it good value for money? Is the research inclusive? How will it be conducted? Can it be implemented?
• Support project funding applications
• Attend early scoping or steering group sessions. As a critical friend they may challenge some areas of the approach or objectives. Are there any circumstances where the research project may not be able to proceed due to staff or funding or unforeseen issues?
• Consider ethical issues and attend ethics committee meetings
• Check plain English documents. Are they clear and not too lengthy?
• Co-author reports and publications
• Help disseminate findings
• Help generate and deliver publicity for the research outcomes
• Help change practice based on your research (knowledge mobilisation)

We need to understand what works and what doesn’t when we develop and deliver activities and capture the difference that public involvement makes to research. This could mean learning from the outcomes of the involvement as well as learning from the process itself.

Evaluating the impact of PPIE is challenging, but evidence shows it leads to more relevant research, improved understanding of public perspectives, and better accessibility. Key impacts include helping to set research priorities, improve study design, and create more meaningful public consent processes.

Positive impacts of Patient and Public Involvement on health and care research

• Improved relevance: Involving the public ensures research addresses the issues that are most important to patients and the community
• Enhanced design and methods: Public input can lead to better study designs, more accessible materials for participants, and improved data collection tools
• Better public understanding and trust: PPIE can improve public trust and understanding of how health data is used in research
• More effective research dissemination It helps create research that is more accessible to a public audience.
• Increased researcher development: It can positively impact the training and development of researchers, such as doctoral candidates

Challenges in evaluating Patient and Public Involvement

• Methodological limitations: Evaluations often rely on retrospective self-reporting, which can be inconsistent and may lack other data sources
• Time and funding: Ensuring meaningful involvement requires significant investment in both time and funding, which can be challenging to secure
• Avoidance of tokenism There is a risk that PPIE becomes a “tick-box exercise” to meet funder requirements without truly sharing power or being substantive
• Ensuring diversity: It can be difficult to ensure that the public voices involved are representative of diverse communities
• Balancing commitments Individuals with lived experience may struggle to balance their involvement with other life commitments