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Motivations for involvement

• Patients and the public engage with research for a variety of reasons spanning: (i) interest in a healthcare topic, often driven by personal experience of a disease or of the health service; (ii) altruistic motivations to contribute to a better healthcare system through research; (iii) a desire to influence and reflect patient perspectives in research; and (iv) a more general interest in research activity and in contributing to scientific knowledge.

Approaches to involvement

• PPI in health research can take place across different stages of a research cycle and at the level of an individual project, a portfolio of projects or at the organisational level. The duration, frequency or regularity of patient and public engagement can range from ad hoc, task-based contributions to long-term engagement across the lifetime of a project or research organisation.

Challenges, enablers and impacts

• Challenges to effective PPI in research relate to governance and management issues, the capacity of individuals to engage, administrative challenges and challenges related to culture, values and attitudes. However, the growing focus on and increased commitment to PPI within research over the past decade has also revealed some key enabling mechanisms and rewards (e.g. feedback on contributions and on project progress and impacts; acknowledgment and recognition of contributions; learning and personal development opportunities).
• The core categories of potential or realised impact from PPI in research span impacts on individuals (e.g. empowerment, influence), on research quality and relevance and on the wider research system (e.g. accountability for resource-use).