Making it clear and relevant: patients and carers add value to studies through research document reviews

Abstract

Purpose – The National Institute of Health Research MHRN established the Feasibility and Support to Timely recruitment for Research (FAST-R) service in 2011, to provide rapid patient and carer feedback on research documents, prior to ethical review. The aims were to improve the feasibility of studies, to speed up regulatory processes and enhance study set up and completion. The purpose of this paper is to explore whether and how the FAST-R service benefits the review process. Design/methodology/approach – An independent evaluator analysed the comments made by FAST-R members on 85 studies over the past 3.5 years. The evaluation team reflected on the nature of these comments and the implications for future practice. Findings – The FAST-R members’ comments fell into seven categories relating to: the quality of the information, the informed consent process, care and protection of participants, practical arrangements for participants, data protection and confidentiality, recruitment and research design. Based on the evaluation team’s experience of research document review, some of these comments were similar to those made by ethics committees. In other cases, the FAST-R Panel provided a different kind of input by identifying concerns specific to service users and carers. Practical implications – Patient/carer involvement in reviewing research documents brings added benefits to existing processes because their views are informed by their knowledge and experience. They are able to question assumptions and highlight concerns that people lacking their perspective might otherwise miss. These findings suggest that patient/carer involvement should form an integral part of ethical review, and that the FAST-R model might be usefully applied to other areas of health and social care research. Originality/value – This original work adds value to the practice of patient and public involvement in research.