This week I have been chatting with one of our NESSIE investigators – Sheila Cameron.  Sheila is one of our Patient and Public Involvement co-applicants and provides expert advice relating to Patient and Public Involvement (PPI) within our reviews. Sheila began her involvement in research by being a PPI member on a review led by the University of Stirling and has since provided input into a number of reviews across different universities. In addition, she is also chair of Glasgow Caledonian University’s Research Partnership Group where researchers can access advice and feedback on their ideas and applications. Sheila is a passionate advocate for the patient and public voice in research and took some time out of her busy schedule to talk to me about this.

Why is the patient and public voice (PPI) important in research?

Asking PPI members what they think is such an important part of the research process. Often researchers and health professionals will make assumptions about what is important or what they think patients and the public want. If you take the time to ask PPI members what they think you may find that you obtain new perspectives on your research.

When should PPI members be involved?

We encourage researchers to involve PPI members at the idea or development stage of an application not when your protocol has been developed and you are ready to submit. PPI involvement and engagement should be about working in partnership and developing ideas together. PPI should be at the top of researchers to do lists and not at the bottom to be ticked off because the application process asks whether it has been completed.

What advice would you give researchers about involving PPI members?

Covid interrupted the engagement process and we have now moved to largely working online but you miss the subtle signs in someone’s body language that tells you they don’t agree. Use your listening skills and really think about what PPI members are telling you, make sure that the PPI voice is coming across strongly. Sometimes researchers can be too focused on finding the answer only to discover they are not asking the right question.

What would you like to see for PPI moving forward?

Not all research studies include the patient and public voice. I would like to see this information included as part of all reviews so we can assess if this makes a difference to the uptake or effectiveness of interventions.

Written by Sheila Cameron & Katie Thomson

Patient and Public Involvement and Engagement within NESSIE / NESSIE - NIHR Evidence Synthesis Scotland InitiativE by blogadmin is licensed under a Creative Commons Attribution CC BY 3.0