Patient and public involvement in research

Dave X

Age at interview: 65

Brief outline: Dave became involved in PPI in health research around three years ago after he was diagnosed with cancer.

Background: Dave is a retired vehicle delivery driver. He is married and has two grown-up children, aged 44 and 42, and three grandchildren. Ethnic background: White/English.

Audio & video

After he’d been diagnosed with oesophageal cancer, Dave decided to get involved in PPI in health research because he wanted to give something back for the cancer treatment he received. He was invited to become a member of a new consumer research panel. The other members come from a variety of backgrounds and have had different types of cancer, but they have found it difficult to get younger people involved. 

As well as allowing him to give back to the NHS for the cancer treatment he received, Dave feels he benefits from PPI because it helps keep his mind active now that he is retired. He has met a lot of new people and feels good about helping others. His involvement in PPI includes reviewing research proposals and patient information sheets. He has also been invited to co-author a publication with a researcher, but isn’t sure what this might involve. He is especially concerned with ensuring that information sheets are written in plain English. He has been involved in organising open events to publicise and encourage researchers to use the panel. He has spoken at these events, and fielded questions from researchers and clinicians about what they can expect from the panel. The panel is becoming more well-known and has begun to receive positive feedback from the researchers they’ve worked with. They are trying to appoint a researcher, who they can call upon to answer their queries about the research they are asked to review. 

Researchers sometimes come along to meetings to present research to the panel and some have shown graphic pictures of tumours. Dave said these can be scary to look at, but he thinks this level of detail is necessary because it reminds everyone why they’re there and stops them becoming blasé about being involved in health research. He feels his battle with cancer has prepared him to cope with anything. 

Dave thinks involving patients and members of the public in health research makes it more credible and may make people more likely to take part. He thinks the public needs to become more educated about research and the need to participate in it. He thinks involving patient and public representatives in research may improve public understanding. His main reason for taking part in PPI is to make a difference and improve things for the future. He would encourage others to get involved in it.


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