Building capacity for service user and carer involvement in research

Abstract

The purpose of this paper is to examine the role of service user and carer involvement in NHS research and describe the nature of this involvement in three specialist mental health Trusts. It also aims to discuss the value of service user and carer involvement and present the perspective of the service user and research manager. The paper reviews patient and public involvement policy and practice in the NHS and NHS research. It examines the effectiveness of involvement activity and utilises a case example to demonstrate the impact of patient/service user involvement on the NHS and the individuals who take part. The paper concludes that service user involvement is essential if research is to support the development of health services that clearly reflect the needs of the service user and impact positively on service quality. Service user involvement is an established element of NHS research and development at both national and local level. The Department of Health strategy for research, Best Research for Best Health, reiterates both the importance of research that benefits the patient and the involvement of the service user in the research process. Despite this, the changes in Department of Health support funding for research, introduced by the strategy, may inadvertently lead to some NHS Trusts experiencing difficulty in resourcing this important activity. The paper illustrates the effectiveness of successful patient and public involvement in research. It also identifies how involvement has developed in a fragmented and uncoordinated way and how it is threatened by a failure to embed it more consistently in research infrastructure.