Transparency in the existence, use, and output of a mental health data resource: a descriptive paper from the National Institute for Health and Care Research (NIHR) Maudsley Biomedical Research Centre (BRC) Clinical Record Interactive Search (CRIS) Platform
Background Transparency in the use of routinely collected mental health data for research is essential in maintaining public support and trust, as well as for supporting the sharing of information and data resources amongst the academic community. The National Institute for Health and Care Research...
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| Format: | Article |
| Language: | English |
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Swansea University
2025-04-01
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| Series: | International Journal of Population Data Science |
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| Online Access: | https://ijpds.org/article/view/2945 |
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| author | Amelia Jewell Matthew Broadbent Claire Delaney-Pope Megan Pritchard Hannah Woods Robert Stewart |
| author_facet | Amelia Jewell Matthew Broadbent Claire Delaney-Pope Megan Pritchard Hannah Woods Robert Stewart |
| author_sort | Amelia Jewell |
| collection | DOAJ |
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Background
Transparency in the use of routinely collected mental health data for research is essential in maintaining public support and trust, as well as for supporting the sharing of information and data resources amongst the academic community. The National Institute for Health and Care Research (NIHR) Maudsley Biomedical Research Centre (BRC) Clinical Records Interactive Search (CRIS) enables a case register of deidentified mental health records from the South London and Maudsley NHS Foundation Trust (SLaM). CRIS supports mental health research across the lifespan from children and adolescents to older adults.
Aim
This paper aims to describe the activities which contribute to ensuring that transparency is maintained throughout the journey of data in CRIS: from data collection, through application in research, to dissemination of findings.
Approach
A communications plan is in place to support Patient and Public Involvement (PPI) and transparency initiatives for all CRIS stakeholders, including patients and carers, academic users, and the general public. Activities can be divided into three categories of transparency: existence, use, and output.
Discussion
There are challenges to maintaining transparency, including ensuring that activities are varied enough to reach all stakeholders, including harder to reach groups, and presenting information in a way that is appropriate for the relevant audience. However, greater transparency has led to more opportunities for researchers to engage with patients and the CRIS model is widely accepted by patients.
Conclusion
This paper set out to describe CRIS communications and transparency activities. We believe the material covered will be of interest to other providers of routinely collected data for research.
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| format | Article |
| id | doaj-art-e39fe6f4b6f84babbb38521fff03db10 |
| institution | OA Journals |
| issn | 2399-4908 |
| language | English |
| publishDate | 2025-04-01 |
| publisher | Swansea University |
| record_format | Article |
| series | International Journal of Population Data Science |
| spelling | doaj-art-e39fe6f4b6f84babbb38521fff03db102025-08-20T02:24:57ZengSwansea UniversityInternational Journal of Population Data Science2399-49082025-04-0110210.23889/ijpds.v10i2.2945Transparency in the existence, use, and output of a mental health data resource: a descriptive paper from the National Institute for Health and Care Research (NIHR) Maudsley Biomedical Research Centre (BRC) Clinical Record Interactive Search (CRIS) PlatformAmelia Jewell0Matthew Broadbent1Claire Delaney-Pope2Megan Pritchard3Hannah Woods4Robert Stewart5https://orcid.org/0000-0002-4435-6397South London and Maudsley NHS Foundation Trust, London, UKSouth London and Maudsley NHS Foundation Trust, London, UKSouth London and Maudsley NHS Foundation Trust, London, UKSouth London and Maudsley NHS Foundation Trust, London, UKSouth London and Maudsley NHS Foundation Trust, London, UKSouth London and Maudsley NHS Foundation Trust, London, UK; Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK Background Transparency in the use of routinely collected mental health data for research is essential in maintaining public support and trust, as well as for supporting the sharing of information and data resources amongst the academic community. The National Institute for Health and Care Research (NIHR) Maudsley Biomedical Research Centre (BRC) Clinical Records Interactive Search (CRIS) enables a case register of deidentified mental health records from the South London and Maudsley NHS Foundation Trust (SLaM). CRIS supports mental health research across the lifespan from children and adolescents to older adults. Aim This paper aims to describe the activities which contribute to ensuring that transparency is maintained throughout the journey of data in CRIS: from data collection, through application in research, to dissemination of findings. Approach A communications plan is in place to support Patient and Public Involvement (PPI) and transparency initiatives for all CRIS stakeholders, including patients and carers, academic users, and the general public. Activities can be divided into three categories of transparency: existence, use, and output. Discussion There are challenges to maintaining transparency, including ensuring that activities are varied enough to reach all stakeholders, including harder to reach groups, and presenting information in a way that is appropriate for the relevant audience. However, greater transparency has led to more opportunities for researchers to engage with patients and the CRIS model is widely accepted by patients. Conclusion This paper set out to describe CRIS communications and transparency activities. We believe the material covered will be of interest to other providers of routinely collected data for research. https://ijpds.org/article/view/2945TransparencyMental healthPatient and public involvementFair ProcessingClinical Record Interactive SearchCRIS |
| spellingShingle | Amelia Jewell Matthew Broadbent Claire Delaney-Pope Megan Pritchard Hannah Woods Robert Stewart Transparency in the existence, use, and output of a mental health data resource: a descriptive paper from the National Institute for Health and Care Research (NIHR) Maudsley Biomedical Research Centre (BRC) Clinical Record Interactive Search (CRIS) Platform International Journal of Population Data Science Transparency Mental health Patient and public involvement Fair Processing Clinical Record Interactive Search CRIS |
| title | Transparency in the existence, use, and output of a mental health data resource: a descriptive paper from the National Institute for Health and Care Research (NIHR) Maudsley Biomedical Research Centre (BRC) Clinical Record Interactive Search (CRIS) Platform |
| title_full | Transparency in the existence, use, and output of a mental health data resource: a descriptive paper from the National Institute for Health and Care Research (NIHR) Maudsley Biomedical Research Centre (BRC) Clinical Record Interactive Search (CRIS) Platform |
| title_fullStr | Transparency in the existence, use, and output of a mental health data resource: a descriptive paper from the National Institute for Health and Care Research (NIHR) Maudsley Biomedical Research Centre (BRC) Clinical Record Interactive Search (CRIS) Platform |
| title_full_unstemmed | Transparency in the existence, use, and output of a mental health data resource: a descriptive paper from the National Institute for Health and Care Research (NIHR) Maudsley Biomedical Research Centre (BRC) Clinical Record Interactive Search (CRIS) Platform |
| title_short | Transparency in the existence, use, and output of a mental health data resource: a descriptive paper from the National Institute for Health and Care Research (NIHR) Maudsley Biomedical Research Centre (BRC) Clinical Record Interactive Search (CRIS) Platform |
| title_sort | transparency in the existence use and output of a mental health data resource a descriptive paper from the national institute for health and care research nihr maudsley biomedical research centre brc clinical record interactive search cris platform |
| topic | Transparency Mental health Patient and public involvement Fair Processing Clinical Record Interactive Search CRIS |
| url | https://ijpds.org/article/view/2945 |
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