PROVIDING TRANSPARENCY ON THE PRESENCE, USE, AND OUTCOMES OF A MENTAL HEALTH DATA RESOURCE, A DESCRIPTIVE ARTICLE FROM THE NATIONAL INSTITUTE FOR HEALTH AND CARE RESEARCH (NIHR) MAUDSLEY BIOMEDICAL RESEARCH CENTRE (BRC) CLINICAL RECORD INTERACTIVE SEARCH

Abstract

Electronic health records collected regularly provide a groundbreaking chance to develop mental health research through offering massive-scale, practical analysis of clinical interventions, results, and service delivery. Nevertheless, since mental health information is sensitive, there has to be a high level of transparency and trust in the patient. This paper analyses the full transparency system that is applied in the National Institute for Health and Care Research (NIHR) Maudsley Biomedical Research Centre (BRC) Clinical Record Interactive Search (CRIS) system, one of the largest and most established deidentified mental health case registers in Europe. The CRIS system is at the South London and Maudsley NHS Foundation Trust (SLaM), which combines structured and unstructured data in electronic medical records and connects with several national datasets, including education, hospital and census data, to facilitate multidisciplinary research in mental health.The key success of CRIS lies in its principle of transparency, involvement of patients and the populace (PPI) and compliance with the United Kingdom General Data Protection Regulation (GDPR) 2018. This paper outlines how transparency is integrated in three major areas: *transparency in existence * (new patients and carers should be aware of CRIS and their rights regarding their data), transparency in use (how data are accessed and utilised in research), and transparency in output (sharing research findings with all stakeholders). The communication strategies will involve leaflets, posters, a full-fledged website aligned with the Health Data Research UK (HDR UK) Transparency Standards, public drop-in, newsletters, academic seminars, and video campaigns. Besides, patient-led governance (via the CRIS Oversight Committee and various advisory groups) facilitates accountability and enhances the so-called social license to use research.

The CRIS approach is also informed by the FAIR principles of Findability, Accessibility, Interoperability, and Reusability, improving mental health research's visibility, reliability, and reproducibility. Through ethical governance and unrestricted cooperation, CRIS has helped publish more than 380 peer-reviewed articles in various psychiatry and population mental health fields. Ensuring inclusive and effective communication with varied groups of service users is still challenging, but with continuous engagement and communication strategy changes, these challenges are reduced. Finally, the CRIS model explains how transparency, supported by patient partnership and effective data governance, can keep the general public trusting and fulfil the scientific utility of routinely collected mental health data. This reproducible model of other healthcare data resources proves that open, patient-focused data management is the key to further developing fair, responsible, and effective mental health research.