Data Sharing Project Part 2

Status Not yet recruiting

Clinical Trial Summary

Patient data from clinical records are increasingly recognised as a valuable resource and a number of global initiatives exist to promote and enable the sharing of data. However, some mental health service-users have expressed concerns about the use of their data by services, but these have not been explored in depth and the acceptable limits of data sharing remain unclear. The purpose of the study is to present different approaches to data sharing, with examples taken from across the world, varying in levels of anonymity and amounts of data stored and shared, with a view to extracting relevant principles directly from mental health service users. The primary objective of this study is to understand from service-users the limits of acceptable pseudonymised data sharing and data collection methods. This will inform the wider scientific community about any emerging questions and issues on pseudonymised clinical data sharing. We aim to explore the level of benefit service-users would accept, in exchange for the level of pseudonymised data they provide. Additionally, this study aims to investigate what service-users consider "identifiable" data, for example whether they consider demographic or location data or purely their real name to be identifiable. This study will ensure service-user views are an integral contribution to future pseudonymised data sharing systems, maximising applicability and acceptability. This study will use qualitative methods, in the form of focus groups, to gather service-user views. Focus groups will consider what participants believe to be identifiable data, who should get access, how should individuals and/or companies get access, how should data be protected and whether these answers change if pertaining to mental health information. Focus group data will be analysed using thematic analysis. Themes produced will be presented to participants in a second focus group. Participants will be encouraged to expand or change anything.

Clinical Trial Description

n/a

Study Design

Related Conditions & MeSH terms

Clinical Trial Details

NCT number	NCT05298514
Study type	Observational
Source	King's College London
Contact	Stephanie Luff
Phone	80423
Email	stephanie.luff@slam.nhs.uk
Status	Not yet recruiting
Phase
Start date	May 2022
Completion date	November 2022

View Details

See also
Status	Clinical Trial	Phase
Completed	`NCT06267534` - Mindfulness-based Mobile Applications Program	N/A
Completed	`NCT04108689` - Internet-based Acceptance and Commitment Training for Elite Ice Hockey Players	N/A
Recruiting	`NCT06012084` - The Development and Evaluation of iCF-PWR for Healthy Siblings of Individuals With Cystic Fibrosis	N/A
Completed	`NCT04085861` - Mental Health in Dancers; an Intervention Study	N/A
Recruiting	`NCT05227352` - Bio-Experiential Spaces for Mental Health in Healthworkers	N/A
Completed	`NCT03663075` - Effect of Group Education and Individual Counselling on Mental Health and Quality of Life in 45-60 Year Old Women	N/A
Completed	`NCT02480907` - Supporting Carers of Children and Adolescents With Eating Disorders in Austria (SUCCEAT)	N/A
Completed	`NCT02157766` - Wisconsin Center for the Neuroscience and Psychophysiology of Meditation	N/A
Completed	`NCT01155687` - Psychosocial Counseling in Afghanistan	N/A
Unknown status	`NCT01177696` - Intervention in Groups of Family Caregivers in Primary Health Care	N/A
Completed	`NCT01037946` - Family to Family: Psychoeducation to Improve Children's Outcomes in HIV+ Families	N/A
Completed	`NCT00700349` - Evaluation of Impacts of Access to Credit and Loan Size for Microcredit Clients in South Africa	N/A
Recruiting	`NCT03885401` - Enhanced Care Planning for Patients With Multiple Chronic Conditions	N/A
Completed	`NCT03118388` - Engaging Homeless Youth in Vocational Training to Meet Their Mental Health Needs	Phase 2
Completed	`NCT05061966` - The Digital Wellbeing Project	N/A
Completed	`NCT04026308` - Written vs Electronic Safety Planning Study	N/A
Completed	`NCT04546061` - Project Uplift: Substance Use and Mental Health Treatment for Young Sexual and Gender Minorities	N/A
Completed	`NCT05738109` - Evaluating the Efficacy of a 91-day Self-talk Mental Health Self-care Journal	N/A
Completed	`NCT03901274` - Partnering for Student Wellness	N/A
Not yet recruiting	`NCT05910580` - Improving Alcohol and Substance Use Care Access, Outcome, Equity During the Reproductive Years	N/A

Clinical trials are conducted in a series of steps, called phases - each phase is designed to answer a separate research question.

Phase 1: Researchers test a new drug or treatment in a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify side effects.
Phase 2: The drug or treatment is given to a larger group of people to see if it is effective and to further evaluate its safety.
Phase 3: The drug or treatment is given to large groups of people to confirm its effectiveness, monitor side effects, compare it to commonly used treatments, and collect information that will allow the drug or treatment to be used safely.
Phase 4: Studies are done after the drug or treatment has been marketed to gather information on the drug's effect in various populations and any side effects associated with long-term use.