Introduction to Patient and Public Involvement and Engagement (PPIE)

We know that researchers and others use a variety of words to describe ways of interacting with patients and the public. The terms involvement, engagement, participation, and experience are sometimes used interchangeably. This guidance, however, adheres to the specific meanings assigned by the National Institute for Health and Care Research (NIHR) to these terms.
We refer to ‘patient and public’ as below:

• Patient: either past, current, or potential at GOSH or other paediatric hospitals.
• Public: parents/carers/guardians of patients, members of the public, people with lived experience of health conditions, staff members from GOSH or other organizations.

‘Research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, or ‘about’ or ‘for’ them’.

• People sharing their views and experience with researchers to help guide and inform how their research is designed, carried out, shared, and put into practice.
• An active partnership between the people and researchers that influences and shapes research with demonstrable impact.

To find out more about how PPI can be carried out please go to [here](insert link to 2. Ways to involve patients and the public in the research cycle about ways to ways to involve patients and the public in the research cycle).

‘Activity where information and knowledge about research is provided and disseminated’.

• Examples include:
  • Condition-specific family days where patients and the public can meet with research teams and associated charities to learn about research findings and be consulted on future research aims.
  • On-site engagement events such as International Clinical Trials Day and Rare Disease Day.
  • Science festivals and other research-related events in the community.
  • Raising awareness of research through various media channels.
  • Dissemination of research findings and/or career talks.

Engaging with people about research often enables discussions to begin for future research direction and helps build relationships with future PPI contributors.

Participation is where a patient is actively taking part in a research trial or study. Research participation comes with the protection afforded by research governance arrangements that include Research Ethics Committee (REC) review to protect the rights, safety, dignity, and well-being of research participants.

Involving patients and the public in making improvements to services or the review of surgical procedures is defined as patient experience.

You do not need to submit an application to a Research Ethics Committee (REC) in order to involve patients and the public in the planning or the design stage of research or obtain formal consent from patients and the public to involve them in your PPI plans.

The REC expects the involvement of patients and the public in research.

Several funding bodies ask grant applicants about their plans and budget for patient and public involvement, including plans for evaluating impact.

For more guidance on costing your PPIE activities review our Payments Expenses and Costings Guidance.