Making it clear and relevant: patients and carers add value to studies through research document reviews
| DOI | https://doi.org/10.1108/MHSI-09-2015-0037 |
| Published date | 14 March 2016 |
| Date | 14 March 2016 |
| Pages | 36-43 |
| Author | Kristina Staley,Joanne Ashcroft,Lisa Doughty,George Szmukler |
| Subject Matter | Health & social care,Mental health,Social inclusion |
Making it clear and relevant: patients and
carers add value to studies through
research document reviews
Kristina Staley, Joanne Ashcroft, Lisa Doughty and George Szmukler
Kristina Staley is Director at
TwoCan Associates, Hove, UK.
Joanne Ashcroft is based at
CRN National Coordinating
Centre, National Institute
for Health Research
Clinical Research Network,
London, UK.
Lisa Doughty and George
Szmukler both are based at
Institute of Psychiatry,
Psychology and Neuroscience,
Kings College London,
London, UK.
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.
Keywords Ethical review, Patient and public involvement, Service user and carer involvement
Paper type Case study
Introduction
Patient and carer involvement has become a requirement for much of the publicly funded health
research in the UK. The National Institute of Health Research (NIHR) asks researchers to
include plans for involvement within their funding applications (Staley et al., 2012). This applies
to the majority of studies supported by the NIHR Clinical Research Network (CRN), which
provides the infrastructure to support the set up and delivery of high-quality clinical research
across the National Health Service (NHS) in England (NIHR CRN, 2015a).
At the early stages of research, when researchers are seeking funding and ethical approval,
patient/carer involvement in reviewing research documents (protocols, patient information
PAG E 36
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MENTALHEALTH AND SOCIAL INCLUSION
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VOL. 20 NO. 1 2016, pp. 36-43, © Emerald Group Publishing Limited, ISSN 2042-8308 DOI 10.1108/MHSI-09-2015-0037
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