Introduction to Patient and Public Involvement and Engagement (PPIE)

We refer to ‘patient and public’ as below:

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

‘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.

Learn about 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 wellbeing of research participants.

Examples of Participation in research are:

• Recruitment to a
  • clinical trial (e.g. to test the efficacy of a new treatment)
  • research study.
• Completing a questionnaire or survey as part of a research study.
• Participating in a focus group as part of a research study.

A useful ‘rule of thumb’ is as follows: PPI activity is not a mechanism for gathering research data from the PPI contributors nor a way of validating qualitative data. If the PPI activity is being done for either of those purposes, then it is not PPI; it is an element of research methodology.

*However, a research participant can take on a patient and public involvement role.

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

• 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. A way for PPI communities to meet and share their experiences and feel seen and heard.
• On-site engagement events such as International Clinical Trials Day and Rare Disease Day where researchers can use creative methods to speak to patients and the public about their work and meet the hospital community.
• Science festivals and other research related events in the community with science demonstrations where members of the public are invited to find out about research and researchers can raise awareness of specific health conditions and research topics.
• Raising awareness of research through media such as television, newspapers. Online via social media and GOSH website.
• Dissemination to research participants, colleagues or members of the public on the findings of a study at conferences.
• Dissemination of research findings and/or careers talks
• At schools and in the community.
• Online webinars or meetings with condition specific groups or charities.

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

• 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.
• Please note: if for example you are looking to approach patients and their families whose care you are not involved with to be involved in your PPI activity then you need to request a colleague responsible for their care to make initial introductions- you cannot access their contact details yourself.
• PPI focus groups contributions are not treated as research data, but instead they help make decisions that shape the research process- a way for PPI contributors to help plan research projects and make suggestions to improve future research. The researcher draws from people’s lived experience to inform aspects of research or decision making.
• You should write up your findings from a PPI Focus Group including the impact they have made but these findings are not ‘research’ – instead they are contributing towards the research itself – helping shape and plan it.
• The REC will not need to consider within its review the active involvement of patients and the public in carrying out research that involves no direct contact with study participants e.g. helping to analyse survey data, postal surveys etc.
• Where people’s involvement results in direct contact with study participants e.g. conducting interviews, the REC will need to give specific consideration to the involvement as an element of the ethical consideration and approval. The REC will need to check that the person carrying out the research has adequate training, support and supervision appropriate to the circumstances in the usual way.
• While no formal consent is required for PPI, it is generally recommended to draw up terms of reference or agreed ways of working for PPI contributors. This ensures that both parties are fully aware of the level of involvement and the associated expectations to consider.

More information can be found on the Health Research Authority (HRA) website

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

If PPI in research is carried out to a high standard, it is more likely to result in ethical research. This is because the research is more likely to be:

• Ethical, relevant and acceptable to the patients it is trying to help.
• Beneficial in terms of delivering meaningful outcomes for patients and/or;
• Conducted in a way that is sensitive to the needs of the participants – through better patient information, recruitment processes and general management of the research project.

Involving the right people well can help to produce research which respects the rights, safety, dignity and wellbeing of participants, which in turn may help to address issues which the Research Ethics Committees (RECs) consider in their reviews. This can contribute positively to the ethical review process, such as by making it less likely that there will be revisions needed to participant information sheets or other documents.

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

There is an expectation that if they are not involving them in the research now or do not have plans to involve them in the future then they need to have clear reasons for this and be able to explain them. Applicants’ responses to these questions will be considered by the reviewers, research panels and boards (which increasingly include patients and members of the public) and will influence funding decisions.

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

• Some people may not have been involved in PPI activities before and/or may need support to talk openly – give them clear information beforehand about what to expect. If you can get members of the clinical team involved on the day, as they often know the patients very well and can put them at ease.
• Start early to allow time for the PPIE to develop into a conversation rather than be a ‘one-off’ process.
• Undertaking PPIE can strengthen future funding applications.
• Patient and Public Involvement (PPI) always means a lot of organising but it’s worth it!