Patient and public involvement in research

Roger A

Male
Age at interview: 65

Brief outline: Roger became involved in PPI in 2006 when his wife died from Motor Neurone Disease (MND). He was keen to help other people who shared similar experiences and felt that becoming involved in research was the best way to do this.

Background: Roger is a widower who has five grown-up children. He is retired, but used to work in transport for people with special needs. Ethnic background: White English.

Audio & video

Roger became involved in PPI after his wife died of Motor Neuron Disease (MND). He had cared for her throughout her illness, and wanted to use this experience to make improvements for other people with MND and their carers. He felt that getting involved in research was the way to do this. 

When he started as a lay representative, Roger found it difficult to grasp the language and jargon professionals used. But he felt it was important to make an effort to understand, and soon began to use the same shorthand and jargon because it made it easier to communicate about complex subjects. He received training in understanding research through organisations like the Dementia and Neurodegenerative Diseases Research Organisations Network (DeNDRon), and has also educated himself using the internet and asking questions of the health and social care professionals he has worked with. 

In the beginning he felt intimidated by the experts he was working with, but soon noticed he could contribute by advising them of the everyday concerns of people with MND and their families. He also realised that the issues he is concerned with in MND apply to other conditions, and wants to share knowledge to make improvements for patients and their families. Roger said he will do whatever it takes to make improvements for others, but he finds public speaking difficult. He has been working with smaller groups and hopes this will improve his confidence so he can take his message to bigger audiences. 

Over the years, Roger has noticed a change in the way professionals see lay representatives; they now more readily acknowledge the contribution PPI makes to health research. He has also noticed a shift in how optimistic researchers and health and social care professionals are about finding a cure for MND. Roger is keen to become involved in research that will change the National Service Framework concerning standards of care for people with MND. He was involved in a funding application for a study that had the potential to do this, but the bid wasn’t successful. He thinks the proposed research was good, but that the application wasn’t presented well enough, so it needs to be reworked and another source of funding found. 

According to Roger, PPI offers a difference perspective to health research. He said, “We need the doctor, the scientist, the PPI. We need a team, and it’s a team effort that will eventually yield the results”. He described his PPI experience as both frustrating and satisfying because even small changes take a long time and a lot of effort to make. But it has been healing for him and is helping him make sense of the tragedy of his wife’s suffering and death. If he can help just one person – a researcher, a student or another family – it will make some sense. He encourages other people to get involved in PPI. 

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