An observational study in Data Sharing, Information Dissemination and Mental Health, sponsored by King's College London. Status unknown. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2022-03-28.
Sponsored by King's College London · Observational
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.
King's College London is the lead sponsor of 506 studies on the registry; 125 are open to participants now.
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We want to capture the views of a broad range of service users who have used mental health services or have experienced mental health problems from diverse backgrounds (ethnicity, age and clinical diagnoses).
Exclusion Criteria:
We are not delivering interventions. This is a qualitative study in the form of focus groups.
Mental health service user opinions on clinical data sharing as explored through qualitative focus groups questions
To understand the requirements of service users, on issues such as privacy, usability, and acceptability of different tiers of data sharing. Furthermore, to investigate what service-users consider "identifiable" data, for example whether they consider identifiable data to be demographic information, location data (consisting of relative and absolute data) or purely their real name. This will be achieved by conducting a focus group in which the participants will be asked about hypothetical models of data sharing and their opinions on it. This will be guided by a topic guide asking the following questions: 1. What is data? What would you consider to be personally identifiable information? 2. Who gets access? 3. How should individuals and/or companies get access? 4. How should data be protected? The focus group will be audio-recorded, transcribed and analysed (via thematic analysis) to answer the primary outcome.
Time frame: Through study completion, an average of 1 year
No study locations are listed for this record.
This study is status unknown, as verified in Mar 2022. You cannot join it, but the record below documents what was studied.
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King's College London