PLAIN ENGLISH SUMMARY

The impacts of involvement in research are often described in terms of the difference made to the research, the people involved and less frequently the researchers. This paper focuses on the researchers' experiences of involvement, based on an evaluation of a pilot project supporting patient/carer involvement in research at Parkinson's UK. Telephone interviews were conducted with researchers from eight different research projects with involvement. The researchers reported gaining new knowledge from patients and carers. They used this knowledge to change their project designs, interventions and new devices. They also gained new skills in communicating with the public. Meeting patients for the first time had a profound impact on some researchers, causing a change in their professional values. Face-to-face contact seemed particularly important to gain a sense of the 'people behind the data', which suggests such meetings may result in impacts beyond those typically achieved through an exchange of documents. Involvement also influenced one researcher's choices and preferences, in terms of who to ask to take part in their study In summary, researchers often learn something new from talking to patients and carers. Facilitating this conversation seems important to maximise the impact of this learning. In future, it might be helpful for evaluations of involvement to ask researchers in more detail about what they learnt from patients/carers and how they applied their new skills and knowledge. This may help to understand how involvement can influence researchers' thinking to have an impact on research.

ABSTRACT

The impacts of patient/public involvement are often described in terms of the difference made to the research, the researchers and the people involved. Involvement often impacts on by influencing the design, delivery and dissemination. Patients/the public report gaining new skills and knowledge, increased self-confidence, and satisfaction from making a difference. There are fewer reports of the impacts on . This paper discusses the findings from an evaluation of a pilot project supporting patient/carer involvement in research at Parkinson's UK, focusing on the researchers' experiences. Semi-structured telephone interviews were conducted with one researcher from each of the eight research projects which involved patients/carers in the pilot. The findings were analysed using theoretical thematic analysis. Learning can be described as acquiring new knowledge, behaviours, skills, values, or preferences. The researchers' reports reflected these different types of learning. They reported gaining new knowledge from patients and carers, which they recognised as distinct from their textbook knowledge of the condition. They used this learning to change their project designs and their new interventions and devices. They also gained new skills in communicating with patients and carers about the aims and significance of their research. Meeting patients for the first time had a profound impact on some researchers causing them to change their professional values. Face-to-face contact seemed particularly important to gain a sense of the 'people behind the data', which suggests such meetings may result in impacts beyond those typically achieved through an exchange of documents. The involvement also influenced one researchers' priorities and preferences, in terms of what questions to ask and of whom, in their project. Researchers learn from an exchange of knowledge with patients/ carers, which influences their plans and actions. This seems to be one way that involvement subsequently has an impact on research. Facilitating this exchange seems important to support mutual learning and to enhance the impact on researchers. Future evaluations of involvement might benefit from exploring what researchers learnt from patients/carers and how they applied their new skills and knowledge.