Patient and Public involvement in research: from tokenistic box ticking to valued team members: We need infrastructure and funding to enable meaningful Patient and Public Involvement in research.

Tracy Jackson, Hilary Pinnock, Su May Liew, Elsie Horne, Elisabeth Ehrlich, Olivia Fulton, Allison Worth, Aziz Sheikh, Anna De Simoni

Research output: Contribution to journalArticlepeer-review

Abstract

Background
Patient and Public Involvement (PPI) in research envisages a relationship built throughout the lifespan of a research project between academics, clinicians and PPI colleagues in order to inform, plan, execute and in due course disseminate and translate research. To be meaningful, all stakeholders need actively to engage in this exchange of expertise. However, despite requirements from some funders for PPI plans in grant applications, there remains a gap between what is expected and what is delivered.

Main body
As an exemplar, we reflect on how, in the Asthma UK Centre for Applied Research (AUKCAR) we set out to create a supportive, organised environment with the overarching value of ‘keeping patients at the heart of everything we do’. Key has been planning and creating a suitably funded organisational infrastructure, with dedicated PPI researchers and the development of and expectation to abide by an agreed set of norms and values. Specifically, expecting AUKCAR PhD students and early career researchers to engage with PPI has established a mode of working that we hope will last. Regular interactions and proactive Patient Leads increase the PPI network cohesion.

Conclusion
With adaptation, the AUKCAR PPI model can be translated to international contexts.
Original languageEnglish
JournalBMC Medicine
Early online date13 Apr 2020
DOIs
Publication statusE-pub ahead of print - 13 Apr 2020

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