Researchers' experiences of patient & public involvement


Age at interview: 52

Brief outline: The aim of Jim’s role is to promote and advance public involvement in research within his organisation and in research in general. He has been involving patients and members of the public for about 20 years.

Background: Jim is the Public Involvement Lead at the Health Research Authority. Ethnic background: White British.

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Jim used to work in a laboratory conducting research and making ingredients for drugs before moving into research management and then into research governance. During this time his first wife sadly died of breast cancer. He channeled his experience of looking after her into his work when he later became head of research at a national cancer charity.  He set up a large research programme within the charity that had public involvement at its heart. 

After several years, Jim left his position in the cancer charity and now works at the Health Research Authority, an organisation that aims to ‘protect and promote the interests of patients and public in research’. In some ways his role is a dual one in which he has to draw on both his personal experiences and the professional skills and knowledge he developed over his career. But, despite his inside knowledge of research and research management, Jim finds it easy to set that aside when he’s giving his perspective as a ‘lay person’. He draws on his vast personal experience of illness that has always been important to his work: as well as losing his first wife, he has also sadly lost several other family members to cancer; and he has remarried and currently cares for his wife who has some chronic health conditions. Whilst he can leave his professional experience to one side, Jim said he can’t forget about his personal and family experience. He said, ‘It’s always there. It’s always part of you. It’s part of your personality. It’s part of you.’

Jim encouraged researchers to involve patients in their research saying that they’d wonder why they hadn’t done it before. He suggested that effective involvement requires interpersonal skills, like the ability to build relationships, to be sensitive to people’s needs and to have a sense of self-awareness. He felt that everyone – patients, members of the public and researchers – would benefit from training in involvement, and believed this would be most beneficial if it was based on how each individual learns and what skills they need to develop. 

It’s ‘blindingly obvious’ to Jim that involvement improves research. He explained that there is evidence in support of this, including studies that showed it improved recruitment rates. He felt that more effort could be made to demonstrate its effectiveness. He also wants to see involvement as a routine part of research. In order for that to happen, Jim felt it needed to be embedded in education, service delivery and research. 


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