Patient and public involvement in research

Alan

Male
Age at interview: 67

Brief outline: Alan has been involved in PPI in health research for about three years. He became involved after he was diagnosed with cancer.

Background: Alan is partnered. He is a retired communications engineer. Ethnic background: White British.

Audio & video

After he was diagnosed with cancer, Alan wanted to get involved in helping other people. At the time of his diagnosis he was introduced to a fellow patient who was able to talk to him about his illness. He decided to join a clinical trial for the drug that is currently successfully treating his cancer and found that there were many benefits to taking part in research, including what he described as ‘more scrutiny’ from health professionals. 

Because he felt he gained so much from his research experience, Alan wanted others to benefit too. He became involved in a local patient and public involvement group. That group reviews research when it is being designed and also helps researchers to make sure the public information about their study is clear and easy to understand. They hold events a couple of times a year to meet with researchers and health professionals, where they encourage them to use the PPI group as a sounding board when they are designing their research because they provide a different angle. 

In meetings with professionals who use lots of jargon or acronyms, Alan said people should feel confident to ask for explanations when they don’t understand something. Usually he has other PPI representatives with him in meetings so this isn’t always a problem. The others he works with are mostly like him – white and retired. He thinks there should be more effort made to ensure people who are in ‘hard to get’ groups are included in PPI. This could be done by making payments and reimbursing people’s costs for things like babysitting. 

There are definite personal benefits for Alan in doing PPI: he gets to work with nice people, makes research more user-friendly for patients and hopes it will help, not only individuals, but future generations. Alan described the work his PPI group does as “just a little cog…moving in the right direction”. He didn’t think it was possible to measure the impact of the work they do, but he felt that was often true of the things we do in life. 

Alan encouraged other people to get involved in PPI. He said they should try it and if it wasn’t for them they could drop out. He also encouraged researchers to get PPI groups to review their research because he said, ‘If it can’t stand a few people throwing a bit of mud at it, then it’s not worth doing anyway’.

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