Researchers' experiences of patient & public involvement

Gail

Female
Age at interview: 42

Brief outline: Gail’s role involves clinical practice and research. She has been involving young people in her work, which currently focuses on the transition from children’s to adult services, for about 12 years.

Background: Gail is a consultant clinical psychologist. Ethnic background: White British.

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Initially Gail involved young adults in service improvement work. She felt strongly that they should be involved in guiding the project in which other young adults would be invited to participate. In her latest project about transition to adult services, she is responsible for involving 20 young people, aged between 14 and 21. Gail said her role was to ensure that the values of the involvement strategy were upheld, that the researchers and clinicians work in partnership with the young people and that they, in turn, have the ability to influence the decisions that are being made about the research. She said this involved communication and thinking about power dynamics because just inviting the young people in isn’t enough; that won’t improve the research. They need to be part of the working relationship, which Gail said has to continue to be ‘negotiated as you go’.  

Gail said the young people’s role is to bring their own views and experiences of having a long-term condition or caring for someone who does. Their involvement has evolved as the project has developed. Initially, she invited them to do what they felt comfortable doing. She also thought that having an end product was important. Taking a flexible approach to involvement has led to the young people posing research questions of their own; they are interested in the use and utility of health passports. In the beginning, Gail anticipated that new group members would join as old ones dropped out, but this hasn’t happened; the majority of the young people have continued to be involved and have developed a lot of skills. 

However, Gail feels that current research and thinking about involvement has progressed without proper consideration of some basic principles, like what it is and how it can be done: ‘There are no hard and fast rules… but we do need to develop the concepts and develop the practices a bit more’. She thinks it is important to try and capture the impact of involvement because we need to be able to demonstrate how it has made a difference. Having clear aims and goals from the outset will make it easier for researchers to demonstrate what has been achieved. 

Gail would encourage other researchers to involve patients and members of the public. She believes that not only do they have a right to be involved, but they will improve the research. She said that it’s important for researchers to get the right processes in place before they begin, but they should also be prepared to be flexible. Gail said involvement is firmly part of the health research agenda and is vital to securing funding, but she thinks it could be done better, especially by sharing practice between health services and researchers from a wide range of disciplines.

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