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  • The Healthcare Improvement Studies Institute: Involving patients and the public in research (25 July 2019)

    Claire Cox
    • UK
    • Reports and articles
    • Pre-existing
    • Original author
    • No
    • THIS Institiute
    • 25/07/19
    • Health and care staff, Patient safety leads, Researchers/academics


    This report aims to build a better understanding of the role of patient and public involvement (PPI) in research, helping ensure meaningful involvement that has tangible impacts and to mitigate against undesired consequences.


    Key findings:

    • Though PPI is increasingly common in healthcare research, there is limited agreement about how, when, and why it should best be done.
    • Patients and the public get involved in research for a variety of reasons but often because they want to help others and contribute to a better healthcare system.
    • To enable involvement, PPI needs to be funded adequately, opportunities need to be clearly communicated, and support needs to be available for researchers and PPI contributors.
    • More PPI on its own doesn’t necessarily mean better research, and doing PPI just for the sake of it can discourage researchers and disenfranchise people who get involved. PPI should be relevant and meaningful for the research and the people involved.
    • PPI has the potential to improve research and empower contributors, but evidence about how that actually happens, to what extent, and to what effect, is limited.
    • To monitor and evaluate PPI, researchers will need to agree on what study designs are appropriate, be clear about what PPI activities are meant to achieve, and focus evaluations on the process of PPI and/or its contributions to research.
    The Healthcare Improvement Studies Institute: Involving patients and the public in research (25 July 2019) https://www.thisinstitute.cam.ac.uk/research-articles/involving-patients-public-research/
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