C4C Focus Groups
Research type
Research Study
Full title
Diversity on a mental health research register: Barriers and Facilitators to the Consent for Contact Register.
IRAS ID
257179
Contact name
Til Wykes
Contact email
Sponsor organisation
King's College London
Clinicaltrials.gov Identifier
N/a, N/a
Duration of Study in the UK
2 years, 6 months, 23 days
Research summary
The improvement of health services and treatment is reliant on research. This requires the effective recruitment of potential participants to studies. This can be a challenge due to time and necessary negotiations with care teams (Papoulias, Robotham, Drake, Rose, & Wykes, 2014).
The NIHR Biomedical Research Centre at the South London and Maudsley National Health Service Foundation Trust (SLaM) and King’s College London aimed to tackle this problem by developing a novel recruitment method known as the 'Consent for Contact' (C4C) register. This makes use of electronic patient records and through a process allows researchers with ethically approved studies to access identifiable service user records for the purposes of recruitment. Service users are asked if they are willing to be contacted about current and future research projects and are willing for researchers to identify them from their case records.
Some studies suggest that potential participant registries are generally viewed as favourable among patients (Callard et al., 2014; Robotham et al., 2015) and researchers (Papoulias et al., 2014). Despite this, there is limited evidence as to why service users may not want to be part of a registry.
Although the C4C registry is well represented compared to the SLaM population, analysis of the C4C database has identified two groups of service users who say no more often than other groups: (1) women across a majority of ethnicites, (2) south Asian men. We will conduct focus groups to understand the potential barriers to enrolling groups of participants who have been identified from our database as having lower C4C registration rates. This study aims to fill the gap in the literature and help to guide the initiation or maintenance of research registries, enabling them to be as representative as possible.
REC name
London - Stanmore Research Ethics Committee
REC reference
19/LO/1144
Date of REC Opinion
27 Aug 2019
REC opinion
Further Information Favourable Opinion