Plain English summary

A small medical school research project entitled ‘PPI to strengthen clinical and population health research’ caused me to look at an entirely new field – that of Public and Patient Involvement (PPI). PPI is the development of an active partnership between patients and the public and researchers to work alongside each other not just during trial participation but, at each research step.

Internet research and use of materials supplied by my tutors changed my understanding and appreciation for the field of PPI. Coming across the story surrounding gay rights campaigners and development of early PPI inspired me to investigate how it is used it modern studies. It struck me how despite its importance, PPI often went undiscussed in contemporary studies.

However, one study named PROUD used and reported PPI in an exemplary fashion in order to combat issues and strengthen the trial. PROUD’s PPI improved study design, safety and advertising as well as providing reassurance in difficult times. It also improved recruitment, dissemination of information and made sure that results and future research fields were relevant.

Through PROUD and also my own experiences working with a PPI group I was able to develop an understanding and appreciation for the importance PPI. I write with hope to make my learning available to others.

Abstract

A research project during my third year at medical school introduced me to PPI. PPI is defined as research carried out with or by members of the public rather than toabout or for them. Historical gay rights activists’ involvement in research catalysed developments in PPI before it was widely recognised. A contemporary study, PROUD, used exemplary PPI contributions to tackle these issues and make the study successful.

My research project was entitled ‘How did PPI contribute towards the PROUD study & what can be learnt from this?’. This letter aims to answer this question but also include my personal reflections on my work and how I developed an understanding and appreciation for the importance PPI. PubMed and Google were examined, as well as University resources.

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Correspondence with PROUDs lead investigator also informed this letter. It was found that PROUD’s PPI improved study design, safety and advertising as well as providing reassurance in difficult times. It also improved recruitment, dissemination of information and made sure that results and future research fields were relevant. This allows us to understand and appreciate PPI‘s role in research and the provision of healthcare. It is also important to increase discussion and learning around PPI for the future.