Service User Data Sharing Study
Research type
Research Study
Full title
SHARE: Investigating service user opinions on sharing levels of personal clinical data
IRAS ID
310873
Contact name
Til Wykes
Contact email
Sponsor organisation
King's College Lonon
Duration of Study in the UK
0 years, 12 months, days
Research summary
This study is focused on the sharing of clinical mental health data between researchers across NHS sites and universities. Sharing this data has had significant growth in recent years and can improve research in output, efficiency, accuracy and quality. It is becoming increasingly important in research to consider large datasets by putting data together from across the UK to inform the understanding, prevention, and development of treatments of different mental health problems. However, sharing this data can come with confidentiality and anonymity risks, such as personal data being connected back to the individual. This study seeks to understand service users' opinions about the balance between the potential outcome and benefit of research, with the risk of personal identification. Anyone who has used mental health services in the past or currently and can communicate in English is eligible. SLAM will be the ‘site’ used but we will recruit from services, community centres, via flyers and posters. The research will be carried out on King's College London premises or online. The study is expected to last one year. We will present the service users with research scenarios and ask them for the level of anonymity they consider appropriate in focus groups. This information will then be used in a thematic analysis to produce and develop a framework to guide responsible data sharing for health research grounded in the perspectives of the public.
Anyone who has used mental health services is eligible and the research will be carried out on King's College London premises or online. The study is expected last one year.REC name
North West - Greater Manchester Central Research Ethics Committee
REC reference
24/NW/0306
Date of REC Opinion
24 Oct 2024
REC opinion
Further Information Favourable Opinion