Participation - finding out what difference it makes

Practice site 10: London Primary Care Studies programme

This was a commissioned evaluation of the impact of service user involvement in research across a wide range of settings within primary care. Service users were involved in interview design, revising questionnaires, finding new ways to collect data and increasing number of participants. They contributed to interpretation of data and to dissemination of findings through their own networks. Service users and carers changed services based on the research findings, and measured the impact of those changes. There was a direct relationship between the level of engagement and positive feelings about it. Service users and carers who felt more remote from the senior researchers were more likely to report a mixture of positive and negative experiences of their participation. Methods used included regular telephone contact and easy to understand language. There was a need for respect for service user knowledge and insights and a strong commitment from everyone to use involvement to improve research and service delivery. In projects not achieving this level of partnership, participants reported the use of jargon by researchers and clinicians. The report provides guidance on best practice in service user involvement in evaluation.

Contact details

Contact person: Nicky Britten

Address: Peninsula Medical School St Luke’s Campus Exeter EX1 2LU

Telephone: 01392 264859

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