Patient and public involvement
Patient and public involvement (PPI) in research is an important part of all OCTRU trials. PPI, by people with real life “lived” experience is essential to enable high quality trials to be developed, grow and blossom. OCTRU trials, and the researchers running them, actively involve patients and the public in their research.
Within OCTRU we believe that PPI activities should be embedded throughout the lifecycle of the whole study.
This may include:
- Defining the research question to be addressed and important outcomes
- The acceptability of the trial intervention and its timing
- The design of the protocol, for example, the patient journey and methods of data collection
- Input to participant facing materials, such a patient information leaflets
- Recruitment strategies
- Ensuring diversity and inclusion of trial participants
- Interpretation of trial results and dissemination activities
- Membership of project advisory/steering group and/or as co-applicants on research projects and grants
The National Institute of Health and Care Research (NIHR) has produced detailed guidance on the different roles related to supporting PPI in research.
The NIHR defines public involvement in research as doing research ‘with’ or ‘by’ people who use services rather than ‘to’, ‘about’ or ‘for’ them. It is an active partnership between patients and the public and researchers in the research process.
Within OCTRU we strongly embrace the ‘with’ and ‘by’ active partnership philosophy.
RESOURCES for members of the public and patients
We are always keen to hear from members of the public who would like to get involved as PPI members on our OCTRU trials. Your knowledge from having experienced your own care, or the care of others, is of great value to researchers. You can get involved at each stage of research process, from the design of a study to sharing the results.
Our website gives details of the areas of healthcare in which we are conducting trials. If you would like to get involved please email firstname.lastname@example.org or call 01865 223469 for more information.
Other useful links:
- Oxford Patient Engagement Network for Arthritis and Musculoskeletal Conditions (OPENARMS)
- Oxford Trauma and Emergency Care Patient and Public Involvement Group
- Oxford Biomedical Research Council Patient and Public Involvement Group
You can also find out more about patient and public involvement, what you can contribute and how to find other opportunities via the NIHR “I want to help with research” website.
RESOURCES FOR RESEARCHERS
The NIHR provides a comprehensive set of resources for researchers to support the involvement of patients and the public in research. These include:
- Being Inclusive in Public Involvement in Health Research
- Briefing Notes for Researchers
- Co-production in action (Number one)
- Different experiences: A framework for considering who might be involved in research
- Guidance on coproducing a research project
- Involving children and young people as advisors in research
- Payments guidance for researchers and professionals
- Payments guidance for members of the public
- Plain English Summaries
- Public co-applicants guidance
- Public Information Pack
- Public Information Pack Supplement - Finding out more
- Reaching Out: A Practical Guide to Being Inclusive in Public Involvement
- Starting out guide
Other useful links:
- NIHR Research Design Service - advice and support on public involvement in NIHR funding applications.
- NHS England - practical guidance on how to increase diversity in research participation.
- People in Research - advertising opportunities for members of the public to get involved in your project.
- Health Talk - library of videos of people’s experience of being involved in research.
- Learning for Involvement (developed by NIHR) - training and resources to support public involvement in research.
- University of Oxford, Medical Sciences Division - guidance for PPI researchers.