Consumer involvement in health research : Fact or fiction?

Abstract

Consumer involvement is now firmly established as National Health Service (NHS) R&D policy. This study identified the range and diversity of current NHS research projects involving consumers within an NHS region, to investigate the extent to which the policy is being implemented. Trust R&D directors and managers were surveyed and the National Research Register scrutinized. Researchers were found to be involving consumers in research in less than a third of trusts in the region. Difficulties were encountered in categorising research activities and the level of consumer involvement, suggesting that more precision in describing consumer involvement in the research process is necessary. Researchers had concerns about the practicalities of involving consumers and expressed a need for more direction and resources. Makes recommendations for trust management to facilitate more active involvement of consumers in research.