We have worked with our Patients and Research Strategy Group to develop a framework for evaluating PPI at the Oxford Health BRC. It is informed by our PPI Strategy and the UK Standards for Public Involvement.
It aims to build understanding of the short and longer-term impacts of patient and public involvement and the experience of our PPI contributors and researchers. We also hope it will support researchers and PPI contributors to reflect upon their involvement activities.
We have designed a flexible framework to reflect a wide range of research projects and PPI approaches, with room for individual researchers and PPI contributors to identify what is most important to them.
We have created two surveys to help us to collect feedback:
We will produce an annual report with the learnings from the evaluation, to be shared with PPI contributors, researchers and on the Oxford Health BRC website.
Background: values and experience of PPI contributors and researchers
Between May and September 2020 we engaged with PPI contributors and researchers to identify what experiences and outcomes matter to them.
Three underlying themes were reflected: the importance of PPI in improving understanding of the patient, carer and service user experience; the value of involvement from early in the design of a research project; and the role of PPI in making research more accessible to a public or lay audience.
For PPI contributors their reasons for being involved included wanting to: contribute towards finding better treatment, care, prevention and diagnosis; give voice to the experience of patients and carers; learn more about research and medical science; be part of something useful and part of a team.
PPI contributors emphasised they want to support researchers and help make research the best it can be. They wanted their involvement to contribute towards ensuring:
- Research is patient centred and asks questions that matter to patients
- Researchers understand the experience of having a diagnosis of a mental health problem or dementia, or of being a carer
- Information about research is accessible
- Research is designed in an accessible way
- Research considers diversity and equality
Researchers identified that PPI had helped shape the goals of their research, the research methodologies used, the analysis of research data and the dissemination of their results. In addition, for researchers, PPI contributors had encouraged reflection, brought issues such as ethics and consent to life, and provided a different perspective through sharing experience.
For PPI contributors the most frequently mentioned factors contributing to a positive experience of PPI were:
- To be provided with clear and timely information about the research project and PPI activity in order to feel confident and prepared to contribute.
- To be listened to, valued and respected – not to feel tokenistic or as though they were ticking a necessary box.
- To receive feedback on the difference they had made to a project, and to be updated as the project progresses.
Other areas identified as important were that: PPI contributors felt supported and able to ask questions; the PPI was well planned with a clear focus; accessibility needs and preferences of PPI contributors were asked about and addressed; and the process for claiming expenses and payment was clearly communicated.
For researchers, especially positive experiences of PPI were associated with collaborative working and a constructive approach within PPI activities. Researcher feedback also identified the value of good preparation and clear communication as making an important contribution to positive experiences of PPI.
This section details the outcomes we want PPI at the Oxford Health BRC to deliver, based on consultation with PPI contributors and research staff.
A: Impact for Oxford Health BRC
- Outcome #1: Increased capacity in PPI at OH BRC
- Outcome #2: Positive experiences of PPI for PPI contributors and research staff
- Outcome #3: Increased diversity and inclusion in PPI at OH BRC
B: Impact for research projects
- Outcome #4: PPI has a direct impact on research projects, including their design, funding and delivery
- Outcome #5: PPI contributes to the longer-term success of research projects
C: Impact for PPI Contributors
- Outcome #6: PPI contributors are a valued part of research
- Outcome #7: PPI contributors make a difference to research
- Outcome #8: PPI contributors have increased confidence to be involved research
D: Impact for researchers
- Outcome #9: Researchers have increased confidence in carrying out PPI
- Outcome #10: Researchers have increased awareness of patient/carer/service user experience
- Outcome #11: Researchers have increased confidence in communicating research to a lay audience
E: Process and Context
We will collect the following information to provide further context to our evaluation:
- For research projects: method of PPI activity; point in the research cycle; specific communities or populations engaged; number of PPI contributors involved. To be collected at point of contact with PPI theme via a PPI project form, or when PPI activity is longer term, on an annual basis.
- For PPI contributors: equality monitoring characteristics, number of PPI opportunities engaged with. To be collected on an annual basis.
- For researchers: BRC theme or department, previous PPI experience, type of research study, reason for doing PPI.