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Title: The PC11 Report. An evaluation of consumer involvement in the London Primary Care Studies Programme.
Author: Barnard, A., Carter, M., Britten, N., Purtell, R., Wyatt, K. & Ellis, A.
Date Published: 2005
Reference: Peninsula Medical School, Exeter, UK.
Are service users or carers authors: Yes

Abstract:

Aim: This is a report of an evaluation of the impact of consumer involvement in 11 primary care research projects in London, which were all required to involve service users or carers as a condition of funding. Training and support was made available to everyone involved. The evaluation also looked at the impact of this training. The evaluation team was made up of researchers and a service user.

Method: The team:
  • looked at documents, including commissioning papers and progress reports
  • interviewed a range of stakeholders
  • sent questionnaires to everyone involved in the project
  • undertook two focus groups
  • ran a feedback day.

Findings/recommendations: The way that people saw their own role (for example service user, researcher, carer, other) was not always the same as the way other people saw them.  This can lead to problems and misunderstandings. 

Involvement took place in different ways and at different stages of the research. In most cases, service users and researchers had not been involved in designing the research. 
 
82% of principal investigators who responded to the survey agreed or strongly agreed that service user or carer involvement had been useful, with the same percentage saying that they believed that service user/carer invovlement had had or would have a positive effect on the research outcome. 
 
Service users and carers described many benefits and positive experiences of involvement.   
 
Common themes identified through the interviews and focus groups were:
  • empowerment
  • support
  • communication
  • resources
  • motivation.
People's experiences of these themes varied - but many people mentioned them. 
 
The researchers found that service user/carer involvement had the following effects:
  • changes to research questions
  • changes to research tools (for example questionnaires)
  • new ways of collecting and explaining data
  • wider dissemination of findings
  • better implementation and measurment of this implementation
  • more service users and carers involved in research.

Many people said that training had been useful.

The researchers conclude that criteria used to measure successful involvement should be specific to each project.  They make a series of recommendations to researchers, research commissioners, ethics bodies and potential collaborators. 

Related entry: none currently available

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Categories: health
Designing research
Undertaking research
Writing up and disseminating
Evaluating
impact on research
impact on service users involved
impact on researchers
impact on implementation and change
impact of public involvement
book
Implementation and change

Date Entered: 2006/09/05

Date Edited: 2012/11/21

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