Researchers' experiences of patient & public involvement


Age at interview: 36

Brief outline: Felix is a research fellow. He has been involving people in research for the last three years.

Background: Felix is married. Ethnic background: White German.

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Felix describes his research background as multidisciplinary. He worked in Germany and Switzerland before moving to England. He had involved people in research before, but began to do so on a more formal basis as part of a synthesis of qualitative research on involvement. He said that reading all the research on involvement was a good way to learn about it. The synthesis considered how to demonstrate the impact of involvement and how to plan an impact assessment within research projects. The findings showed that involvement is challenging for both researchers and patients because everyone has different expectations. They also demonstrated that the majority of impacts (both positive and negative) of involvement were on people, which, for him, was somewhat 'eye-opening'. As a result, Felix believes that researchers have a responsibility to consider the risk associated with involving people and that it is unethical to engage in involvement without being fully committed to it.

For the synthesis, a group of patients and members of the public were involved on a consultative basis. Felix bakes cakes for the meetings, which were held at the university, because he wanted the atmosphere to be relaxed and casual. He thought it would be better for meetings to be held in a less formal setting and advised others to consider this when applying for research funding. 

Felix said it was important to create sustainable involvement groups so that research could continue to benefit from knowledgeable and informed service users. He said approaches to involvement need to be serious and flexible. In his current work, the involvement group said they would like to be involved in analysing qualitative data, so he is going to train them how to do that.  Although this may slow down the process, Felix hoped it will make the analysis more meaningful.

Felix has always had a strong ethos about involvement and thinks there's no point in doing research unless it has 'a real world relevance'. He sees himself as an advocate for the public position in research and feels he can empathise with patients' experiences and perspectives. Involving people is an addition to the rest of his job, but he is happy to do it because he’s found that working with the public is gratifying and keeps his research fresh. It also validates his views and perceptions of the world, and of his research. But if he couldn't involve people well he said he would prefer not to do it at all. He feels strongly about researchers being accountable to the public and, in future, would like to see the public becoming more involved in setting the research agenda and formal structures put in place to support involvement.
Felix would encourage other researchers to involve patients and members of the public in their work and said that despite the difficulties associated with it, it is worth doing. He hopes senior staff will lead by example, and promote and support good involvement in future generations of researchers.


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