Researchers' experiences of patient & public involvement


Age at interview: 31

Brief outline: Rebecca is responsible for leading research projects in addition to supervising students and liaising with stakeholders. She is also the PPI Centre lead and has been involving patients and members of the public in her research for two years.

Background: Rebecca is a research Fellow. Ethnic background: White British.

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Rebecca realised she wanted to involve patients in her research after conducting an evaluation of a global user-led research project. She was inspired by the patients who led it. After her PhD, she was funded to carry out some exploratory research projects in which patients were involved. She held discussions with community groups and used their feedback to shape the research. Rebecca built a good relationship with these groups by holding regular meetings so everyone got to know each other. She made sure everyone was included in discussions and that they knew their input would make a difference. 

Rebecca thinks involvement is about getting patients or members of the public to help develop research in its earliest stages, then guide and shape it throughout the process. She said it was important for researchers to be able to communicate well, manage time and ensure the involvement is costed correctly. She thinks it’s helpful to be trained in involvement before you start. 

Involvement is a priority for Rebecca. She said it takes up quite a lot of time, but it’s worth it as it enriches research, especially research that’s intended to improve patients’ lives. However, the current evidence for involvement is limited because researchers don’t always report if or how they have done it and Rebecca thinks it would be difficult to measure the difference it makes. 

Rebecca can understand why researchers might be sceptical about involvement because ‘we live in an evidence-based world’, but she would encourage them to ‘be part of the discussion’. She wanted to thank the patients and members of the public who get involved and remind them that researchers aren’t perfect, but learn from their mistakes. She would like more people to get involved and to ‘work together to improve health care’.


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