Patient and Public Involvement and Engagement

PPIE does not refer to participants in the study, or public engagement (where you are talking to people about your research) - it is involving patients and the public in carrying out the research, so we are doing research with the members of the public, rather than ‘to, ‘about’ or ‘for’ them.

PPIE is important as it can:

• Improve research quality: PPIE contributes to more relevant, well-designed, and ethically sound research. By having input from people with lived experience, there is a greater chance that research will be appropriate and effective.
• Enhance study design: Public contributors provide valuable feedback on how a trial should be run, helps to make sure the information is understandable, that the burden and benefits are shared, that people are treated respectfully, and that consent is fully informed.
• Help reduce health inequalities: By involving people who are underserved by research, we can design research that is accessible to people from these groups.
• Increase relevance: PPIE helps researchers understand what topics are important to the public and what outcomes matter most to them.

In Sheffield CTRU, we always involve patients and public with lived experience of the condition being studied in our research - from discussing the initial idea, to sharing our findings. We recognise that certain groups are under-served by clinical research and are committed to ensuring PPIE reflects the population that could benefit from the outcomes of the research.

Patients and the public should be involved in:

• Deciding what needs to be researched and developing research questions that are important to patients.
• Developing research funding applications to make sure they are acceptable to patients:
  • Making sure the outcomes are important to patients.
  • Making sure the proposed design is acceptable.
• The development of trial protocols and study documents to make sure they are acceptable to patients and to make sure the trial is designed with patients in mind.
• Managing and overseeing the trial delivery.
  • Including helping to problem solve if recruitment, adherence or retention is not going well.
  • This could include involvement qualitative research delivery and analysis.
• Helping trial teams to interpret the findings.
• Sharing the findings with their communities and helping decide how and where to share or results.

We follow the UK Standards for Public Involvement, which includes standards on: communications, working together, inclusive opportunities, impact, governance and support and learning.

We use a PPIE plan template for all our trials to ensure that we are involving PPIE contributors throughout the trial and have developed a PPIE induction pack that can be shared with patient and public contributors on our trials. All PPIE contributors are reimbursed for their contributions to the research (just as researchers are paid for their involvement).