Patient and public involvement in research


Age at interview: 57

Brief outline: After having a heart operation, Francesco decided to give up his job. There is a history of heart problems in his family, so he wanted to do things he was passionate about while he still could. He has been a patient and public representative in health research for about 11 years.

Background: Francesco is married with two children, aged 21 and 18. He is retired, but previously worked as a manager of a residential children’s home. Ethnic background: Italian.

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After having a heart bypass, Francesco took early retirement. He had researched his condition and decided to stop working so that he could do the things he wanted to do rather than waiting until later. He didn’t want to rely on benefits so started trying to find paid roles in groups, and on boards and committees. He became a lay reviewer for a funding body, and has been involved in reviewing research protocols, funding applications and participant information sheets. Over the years he has learned to work more quickly so that these tasks don’t take as much time as they used to. 

He has undertaken training relevant to PPI, including a course that is being piloted by a university to train service users, carers and members of the public in assisting lecturers and researchers in delivering teaching and training on health, social care and medical issues. Most of the others on the course work on diabetes research and this slightly concerned Francesco because he thinks it should involve a more diverse range of people with different research interests. 

Francesco thinks PPI should be about doing what interests you as well as what you can add value to. When he takes on a research project, he makes it clear that he will only be involved for about three years unless it is something he is interested in completing. He has travelled all over the country to work on projects and with groups that interest him, but would like to be based closer to home. He is keen to become a research partner at his local university. This role would give him access to the university’s resources. He said it would “confer status” and elevate his position because his work would be recognised and he would be paid. 

As well as becoming a research partner, Francesco would like to take part in a research study. He would like to understand the experience from the participant’s point of view so that he can bring that knowledge to his PPI work. He hasn’t been able to take part in any research to date because he wasn’t eligible or the studies would involve too much travel and no payment, so he couldn’t justify spending time on them. He has done a lot of voluntary work, but still needs to earn money. He thinks it is important that researchers think about budgeting PPI costs into their funding applications. They should ensure that people are never out of pocket and that those on benefits have the costs of their involvement paid in advance so they avoid getting into trouble with the government. 


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