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Research and Patient & Public Involvement (PPI)

A growing area for involvement within the Public Involvement in Education and Research is supporting and providing guidance to researchers who are keen to embed service user and carer involvement into their research in ways which both meet and exceed the requirements for Patient & Public Involvement (PPI) by funding bodies. Meaningful involvement can enhance the relevance of the research study and findings for practice, and can significantly improve opportunities for the dissemination of your findings and impact if working in collaboration with those directly affected.

What is Public and Patient Involvement (PPI)?

INVOLVE define public involvement as “research being carried out with or by members of the public rather than to, about or for them”: www.invo.org.uk

In a concept analysis of PPI, Hughes and Duffy (2018) developed five operational definitions: undefined involvement; targeted consultation; embedded consultation; co-production and user-led research. Open access: https://rdcu.be/5uin

People with lived experience can be involved in identifying research priorities, being members of advisory groups, research circles or expert groups; commenting on research materials; and/or undertaking interviews and research. They can be supported to engage in user-led research as co-applicants on research projects or as experts that you consult with.

INVOLVE identify seven stages of the research cycle where experts by experience may be involved:

  1. Identifying and prioritising (seeking views before you start)
  2. Funding and commissioning (application stage)
  3. Designing and managing (recruitment, methods, ethics)
  4. Undertaking and analysing (data collection and analysis)
  5. Disseminating (communicating your findings)
  6. Implementing (translating findings into practice)
  7. Evaluating (understanding the impact)

Why, what, who and how

When requesting PPI you first need to consider why you want to involve people with lived experience and what you hope to achieve. You can then identify who you wish to involve and which of these approaches and purposes best suits your study and the research you wish to develop.

We encourage researchers to make use of a range of inclusive methods so a range of people with lived experience can contribute in ways which suit them. This will help ensure the relevance, quality and authenticity of your research processes and outcomes at each stage.

References and further reading:

Hughes, M., and Duffy, C., 2018: A Concept analysis of public involvement in health and social care research. Health Expectations. Open access: https://rdcu.be/5uin

INVOLVE 2017. What is public involvement in research? Southampton: NHS. 

Funding for PPI

BU PIER partnership policy and practice is for all participants to be paid for their time and expertise (minimum £10 per hour plus travel expenses). The BU PIER Partnership and the PPI co-ordinator with BUCRU can support researchers to co-ordinate PPI at the pre-award stage. Researchers can apply for internal research funding e.g. pump-priming, Acorn etc. to cover participant costs. Costs for PIER co-ordinator time and participant payments post-award should be costed in full into any funding bids.

If you are a researcher at BU, please complete the BU PIER - Request for PPI form.