Researchers' experiences of patient & public involvement

Jo

Female
Age at interview: 50

Brief outline: Jo’s role is to facilitate involvement and to conduct research. She has been involving patients and members of the public in research for approximately four years.

Background: Jo is a research fellow in patient and public involvement. Ethnic background: White British.

Audio & video

After having a career in a different area of academia, Jo got involved in health research as a service user. She had a lifelong history of mental health problems and it was suggested to her that involvement might help in her recovery. She later became employed as an associate research fellow at a university and in her job supports and facilitates patient and public involvement. Jo brings skills and experience from her academic role, but she said she approaches it as a patient rather than an academic. 

Jo said involvement is about hearing from patients and members of the public who have first-hand experience of living with or caring for someone with an illness, capturing what is important to them and feeding that into research. This may happen in workshops or through working with people one-to-one. Jo felt it was important to get a wide range of people involved, not because this would increase the chances they would be representative of other patients, but to ensure those who are less likely to get involved have a chance to. 

One of her department’s aims is to embed involvement in all research, so there is a budget to pay people for their time and to reimburse their costs. Jo thinks paying people is an important part of showing them that their input is valued.  

In Jo’s experience, people are very disappointed if researchers don’t feedback to them the difference they’ve made to the research. She felt that if patient and public involvement was going to move forward then we need evidence of what works and what doesn’t. But she said that it was often difficult to know what difference it makes and to recognise when it has an impact because it varies so much in different situations and in different research projects. 

Working with patients and members of the public can have what Jo described as ‘huge emotional consequences’. She said, ‘It ceases to be an academic exercise. You’re working with real people… and something seemingly innocuous can trigger something for somebody.’ She would encourage more patients and members of the public to get involved and urged researchers to give it a go. She said they could be surprised at how beneficial it is.

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