3. Patient and public involvement (PPI)

PPI is an increasingly important characteristic of NHS research grant applications. For me though, it’s important that this isn’t tokenistic. There are some really great resources around to support researchers to think about how they use PPI in their projects (see links) and for me, I was tempted to go all the way and have patients interviewing patients, though the practicalities of doing this I thought were a bit beyond what was realistic for the project. I definitely haven’t ruled this out for future projects though!

I accessed input from a PPI perspective by booking an appointment with a local PPI consumer panel. This is a group of PPI representatives who have been trained in research in order to provide feedback on research proposals. It was at this panel that the EMULSION project fundamentally changed.

Up until this point, we had been planning focus groups, to encourage discussion about patient views and knowledge around unlicensed medicines. Because we weren’t sure how much patients would know about unlicensed medicines, we thought that the exchange of knowledge in a focus group environment would provide really valuable insights into unlicensed medicines use. However, those at the PPI panel felt that patients would be much more forthcoming about what they know about unlicensed medicines in an interview setting, and that a focus group environment would likely hinder participants from providing their views. Of course they were absolutely right and this led to a complete switch in methodology.

The other really interesting thing about attending the panel was having to explain what an unlicensed medicine was! It made me realise how important defining what we did, and did not, mean by an unlicensed medicine. It also led to a review of the lay summary of the proposal.

The final and most important output of attending the panel was recruiting Anne, our PPI member of the team. Anne was actually serving on the panel when I presented, and although I should point out that it’s not normal to recruit a member of the panel to a research team directly, panels like this often have a contact list for people who can be approached who they can pass researcher’s requests on to.

PPI members on other research teams I’ve been involved with have been recruited through relevant patient charities and some universities also have groups which can also put you in touch with potential PPI reviewers or those wishing to be involved in research. Your local NHS hospital trust may also have similar groups you can approach.

Useful links

NIHR RDS pages on PPI

https://www.rds.nihr.ac.uk/patient-and-public-involvement/for-researchers/

INVOLVE

https://www.invo.org.uk/