Patient and Public Engagement in Health Research

Patient and public engagement in health research represents a fundamental shift in the conduct of biomedical and services research, moving beyond traditional participant roles towards genuine partnership. By actively involving patients, carers and lay members throughout the research lifecycle—from priority setting through design, data collection, analysis and dissemination—this approach seeks to ensure that studies address questions of real-world relevance and that findings are meaningful to end users. Globally, funders and regulatory bodies have adopted mandates and guidelines to support engagement, recognising its potential to enhance study recruitment, improve participant retention, foster trust and facilitate the translation of evidence into practice. Methodological advances have led to the development of frameworks and toolkits that guide researchers in selecting appropriate levels of involvement, from consultation and advisory roles to full co-production. Despite these strides, challenges persist. Many engagement activities remain under-resourced or poorly evaluated, and tokenistic consultation can undermine the ethical and practical benefits of partnership. Ongoing work focuses on robust evaluation frameworks to measure process and impact, capacity building for both professional and lay participants, and the integration of engagement into routine research governance. By embedding co-design principles and transparent reporting, the field is moving towards more equitable, effective and sustainable engagement that holds promise for improving health outcomes and policy relevance across diverse settings.

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Patient and Public Engagement in Health Research publication trend

The graph below shows the total number of articles in patient and public engagement in health research across all publications each year (not limited to Nature Index journals).

Technical terms

Patient and Public Involvement (PPI): Active collaboration of non-professional individuals in research planning, conduct and dissemination.
Co-design: Participatory approach in which service users and researchers jointly develop research questions, methods and outputs.
Systematic Review: A structured synthesis of all available research on a topic using predefined methods to minimise bias.
Meta-analysis: Statistical technique that combines data from multiple studies to estimate overall effect sizes.
Delphi Consensus: Iterative survey method used to achieve agreement among experts or stakeholders on specific issues.

References

1. Evaluation of research co-design in health: a systematic overview of reviews and development of a framework. Implementation Science (2024).
2. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. Research Involvement and Engagement (2017).
3. Impact of patient and public involvement on enrolment and retention in clinical trials: systematic review and meta-analysis. The BMJ (2018).