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Patient and public involvement and engagement case study: Anne

What made you decide to join the group?

Now that I’ve retired I have more time to devote to it. I've had a liver condition since childhood so I felt my experience would be relevant to the group.

When I was first ill as a child, I wasn’t expected to live. I was given a drug which is now common, but back then it had only just been developed. It saved my life and allowed me to manage my condition so that I could lead a full and active life. I owe my life to the people who researched and developed that drug.

My life was saved by research and I want to give something back so that other people can benefit from research in the way that I benefited.

How did you first hear about the group?

At one of my outpatients appointments I asked if there was anything I could do to help with research and I was put in touch with the patient and public involvement group. I asked because I worked on research studies when I was working in general practice but this is the first time I’ve done patient involvement in research.

What activities have you been involved with?

I've been reviewing plain English summaries of research and patient information sheets. Lots of people don't understand the information they are given in research studies and that's why they don't take part. It's important they are written in a way that makes sense to ordinary people, not full of acronyms and difficult language.

I've been taking part in virtual meetings where we discuss research studies and give our opinions on various aspects, such as how to improve study recruitment. You have to look at the practicalities from the patient's point of view, ill people might be missing work already and might not want to miss another day's work to take part in research. It's important that researchers know what ordinary people think of the research plan so that changes can be made to make it easier for people to take part.

Virtual meetings have made it easier for me to take part in patient involvement activities and I've felt able to take on more projects. It cuts out the need to travel to physical meetings which fits much better with my other commitments. Some of the things I do, such as commenting on documents, are done by email and I can do that when it suits me.

What benefits do you have from being in the group?

I moved to the West Midlands from London a few years ago and patient involvement in research has helped me to meet new people. I've done some really interesting things and it's given me something worthwhile to do with my time.

Since I've been in the Liver and GI group I've learnt about other opportunities for involvement. I've started reviewing grant applications for the National Institute for Health Research (NIHR) and I've done patient involvement with the NIHR Applied Research Collaboration West Midlands.

What would you say to others who are considering getting involved in research?

Don’t be afraid to come forward, people will help you and don’t be afraid to have a voice. We need more people to be involved, not just academics or people who are already involved in research.

You don't need any research knowledge or particular educational background. Everyone I have met is friendly, it doesn't matter what you say, just speak up with your views and you will be listened to.

Last reviewed: 28 April 2021