Researchers' experiences of patient & public involvement

Fiona

Female

Brief outline: Fiona is an orthoptist and a senior lecturer and research fellow. Her job combines clinical practice, research and teaching. She has been involving patients and members of the public in her research on formal and informal bases since 1993.

Background: Fiona is married with two children, aged 9 and 11 years. Ethnic background: White Irish.

Audio & video

Fiona is an orthoptist and conducts clinical trials in vision research and neurological conditions, including stroke. In her clinical practice, she always felt it was important to listen carefully to patients. So when she became involved in academic research she joined forums and committees that involved patients and began to formally involve them in her own research. She said it’s important to listen to patients because they are the ones who have the condition and ‘are able to tell us what’s important to them. I’m only guessing – I’ve not had a stroke.’

Initially, Fiona noticed it was difficult for researchers to know how to involve patients. When she discussed her research with them she found they provided some very valuable insights and input. They have since become long-term friends of hers and she has continued to discuss her research with them. However, she felt it wasn’t fair to continue taking up too much of their time. Consequently, she was involved in setting up a ‘user reference panel’ of stroke survivors and carers, which frequently tries to recruit new members. The panel is chaired by a stroke survivor, but Fiona organises it and does the administrative work for it.

The user reference panel comments on the documents associated with research, including participant information sheets and protocols. Fiona described the panel as a good sounding board for discussing both current and new research ideas and said it was vital to ensuring her research is designed and conducted ethically. As a result of the panel’s feedback, patient information sheets have been redesigned to try to make them as user friendly as possible. Providing feedback to the panel is important, so at the end of each trial, and in addition to academic publications, Fiona and her team write a lay-friendly summary of the research findings, which she sends to everyone involved in the research. 

In general Fiona thinks researchers are divided in their opinions about involvement; some see the value of it and others see it as a box-ticking exercise. As the major health funders involve patients in reviewing grant proposals, Fiona believes that tokenistic involvement will be uncovered and may result in proposed research not being funded. She felt her colleagues were very positive about involving patients and said this was especially true for junior researchers, but she felt that researchers needed proper support, particularly with the administrative side of involvement. 

Fiona would advise others to involve patients in their research because one of the major benefits of involvement is that researchers will never have to think about what they will work on in the future; the patients she is in contact with always supply good ideas that are important to them. Ultimately, her aim is to improve the treatment and care of patients, and involving people in research is important in achieving this.

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