Patient and public involvement in research

Rosie

Female
Age at interview: 55

Brief outline: Rosie has been involved in health research as a mental health service user for about 12 years. She began by working as a service user researcher after she was diagnosed with bipolar disorder.

Background: Rosie is divorced. She is a PhD student researching patient and public involvement in research. Ethnic background: White British.

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Rosie was training to be a psychotherapist and working in the voluntary sector when she was diagnosed with bipolar disorder. She was unable to continue with her training and worried she might never return to work. As part of her recovery, she decided to volunteer with a local mental health charity through which her involvement in health research began. She got involved in a research project as a service user researcher interviewing others with mental health problems. The project was supportive, informal and friendly, and helped her rebuild confidence and adapt to her different identity. 

Even though her initial reason for getting involved in service-user research was to rebuild her life and find a meaningful occupation, Rosie soon found she enjoyed it. Getting involved allowed her to reconnect with some of the skills she felt she lost during her illness. She also made lasting friendships with her new colleagues with whom she shared common interests and experiences. Some of the projects she worked on in the beginning were not research projects, but involved delivering self-management training to others with bipolar disorder and interviewing health professionals as a clinical governance reviewer. Doing these things helped Rosie feel positive and that she could work again without becoming unwell.

When her Disability Living Allowance ended, Rosie successfully applied for a position as a service-user researcher. She found some parts of this job very challenging and learned a lot. She thinks service-user researchers can benefit research because they bring their experiences of the health problem and how it affects their lives, and they ground research in experience. They can improve many aspects of a project (e.g. recruitment) by ensuring that documents are written in a sensitive and easy to understand way. 

Over the years, Rosie has progressively become more involved in PPI. She thinks she is quite an easy person for researchers to include because she gets on well with others and has relevant skills and experience. She has commented on various research documents (e.g. reports, funding proposals and patient information sheets) and has been a co-applicant on funding proposals. She has also been involved in the planning stages of numerous research projects, on both formal and informal bases, and has collected and analysed data. Currently, she is doing her PhD, which is looking at how service users and researchers can work together more effectively. Even though she is now a user-researcher, she believes she can still draw on her experiences of being ill because she is still living with her condition.  

Rosie thinks there are a variety of ways that researchers see patient and public involvement in health research: some believe in its value and always include service-user input; others may think it’s a good idea, but find it challenging to include PPI in their work; and some may feel there are types of research that aren’t appropriate for public involvement. But Rosie thinks most health and social care projects will benefit from having PPI input. She would encourage researchers to work with service-users because this can improve projects.

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