Consumer involvement in cancer research networks: findings from a formative evaluation of the Consumer Research Panels pilot project

Sitzia, John, Brown, Vivienne, Cotterell, Phil and Richardson, Alison (2006) Consumer involvement in cancer research networks: findings from a formative evaluation of the Consumer Research Panels pilot project. INVOLVE National Conference, Hatfield, United Kingdom. 06 - 07 Sep 2006.

Abstract

This presentation presents findings from an evaluation of the Consumer Research Panels (CRP) pilot project.

The CRP project was set up by the National Cancer Research Network (NCRN) and Macmillan Cancer Support in three NHS cancer research networks. The project went on over a two-year period. The project's aim was to establish and support a CRP in each network, as a focus for consumer involvement in research in the network. It was intended that CRP activities might include consumers identifying and prioritising research, commenting at early stages of protocol development, and collaborating with local researchers.

An independent evaluation of the project was carried out. The evaluation wanted to find out how much consumer involvement in research there was, and what that involvement consisted of. We also wanted to find out how the consumers got to meet and talk with local cancer researchers and whether the fact that a consumer panel existed changed the way that researchers behaved in terms of consumer involvement. To collect this information, we spoke to 116 people, either in groups or individually or by questionnaire.

We found that the CRPs had taken quite a long time to become established, and had only really started getting involved in research projects towards the end of the pilot period. The CRPs were becoming recognised as an accessible, expert source of consumer advice and input for local researchers. This input was highly valued by those researchers who had worked with CRPs; however these formed only a minority of researchers. CRP engagement was mainly with academic, non-clinical, non-network research activity.

The presentation will draw on key findings to identify the primary 'drivers' and 'barriers' for consumer involvement at the local NHS level

This record has no associated files available for download.

Contributors

Author: Alison Richardson

Download statistics