Evidence Library
Abstract:
This paper reports on the experience of involving users in a pilot study to investigate the costs of illness to stroke survivors and their families. A standing forum of stroke survivors/ family members associated with the King's College London Stroke Research Programme identified the need for the study. The forum was also involved in choosing the methods, developing and piloting the questionnaire, and analysing the results of the pilot survey.
The authors reflect on their experience of working with service users and the nature of the involvement. They also describe the reactions of their academic colleagues to the concept of involvement.
They conclude that the involvement made a difference to the research in three ways:
- It led to the identification of questions regarded as relevant and important by service users as opposed to professionals.
- It helped to refine the methods.
- It helped to reconceptualise the problem of the economic costs of disease in a way that incorporated the views of service users.
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Categories: health
public health
social care
Identifying topics, prioritising and commissioning
Designing research
Analysing and interpreting
impact on research
impact of public involvement
reflecting on public involvement in research
journal article
Date Entered: 2010/09/28
Date Edited: 2012/11/21
Additional Info: