Patient and Public Involvement and Engagement (PPIE) in research is defined as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. It recognises that patients, families, and communities bring valuable lived experiences that can make research more meaningful, ethical, and relevant to real-world needs. Involving patients and the public strengthens the quality, acceptability, and impact of health research. It ensures that research questions reflect community priorities, study designs are culturally appropriate, and findings are shared in ways that people can understand and use. According to the National Institute for Health and Care Research, PPIE can be understood across three levels: participation, engagement, & involvement, with each representing a higher level of public contribution and influence.
- Participation: Participation is the foundational level of PPIE, where patients or members of the public are study participants. This has historically been the most common form of interaction between researchers and the public.
- Engagement: Engagement refers to the sharing of information about research with the public. It is often a one-way process, where researchers communicate what they are doing and what they have found. Examples include using infographics or videos to share study results, or holding community meetings to discuss findings.
- Involvement: Involvement represents the highest level of PPIE, where patients and community members work in partnership with researchers throughout the research process, from setting priorities and designing studies to analysing results and sharing outcomes. Involvement fosters collaboration, ownership, and trust.
Benefits of PPIE
- Enhanced Research Quality: Patients and the public offer valuable insights into what matters most to them, improving the relevance, feasibility, and acceptability of a study.
- Improved Recruitment and Retention: Patients and the public are best placed to identify the most effective and acceptable recruitment strategies and ensure study materials are clear and accessible. They can also provide advice on how to keep participants motivated to remain in a study.
- Ethical Research Conduct: Involving patients and the public aligns with the principle of “nothing about us without us” and helps ensure adherence to ethical standards. Patient input also helps with gaining ethical approvals.
- Increased Awareness & Impact: Engaging with patients and the public raises awareness and acceptance of the research, supports participant feedback, and helps translate findings into practice.
- Success with Funding Applications: Funding agencies increasingly require the involvement of patients and the public in study design and conduct due to the multiple benefits of PPIE on research quality and efficiency. Studies that incorporate the patient voice in design are more likely to succeed in gaining funding.
Levels of PPIE
- Participation: People recruited to a clinical trial or other research study.
- Engagement: Information and knowledge about research is provided and disseminated.
- Involvement: Active partnership between patients and the public that influences and shapes research.
Types of Involvement
Members of the community and experienced PPIE coordinators can support all aspects of study design, conduct, and dissemination. Maximal benefit is achieved when patient and public partners are included early in the process. A key way to enable effective involvement is to establish and maintain a PPIE group of members and coordinators that can:
- Advise on research priorities to help identify the most relevant health topics, populations, and interventions to study from the perspectives of patients and the public.
- Advise on the design of study protocols to make them more feasible, acceptable, and relevant to patients and the public. This can include advice on participant selection, intervention protocols, and outcome measures.
- Contribute to the ethical review of studies to ensure that the proposed research is acceptable to patients and the public before formal institutional ethics review.
- Safeguard patient and participant rights to ensure no harm is done during research.
- Support the development of study materials such as participant information sheets, informed consent forms, recruitment leaflets, posters, and social media content.
- Support the conduct and implementation of studies by improving recruitment strategies, informed consent processes, administration of interventions, data collection, and follow-up.
- Participate in data analysis to ensure the patient perspective is incorporated into the interpretation of study results.
- Support the dissemination of results to the public by providing advice and feedback on dissemination strategies and materials (e.g., posters, infographics, videos, articles, presentations, workshops, public events).
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