The challenges and opportunities of mental health data sharing in the UK
Tamsin Ford, Karen L Mansfield, Sarah Markham, Sally McManus, Ann John, Dermot O'Reilly, Tamsin Newlove-Delgado, Matthew H Iveson, Mina Fazel, Jayati Das Munshi, Rina Dutta, Gerard Leavy
(+11 others)
2021
The Lancet Digital Health
The challenges and opportunities of mental health data sharing in the UK The UK's National Health Service (NHS) generates uniquely rich data that should be rapidly deployed for policy and service improvement, yet researchers report difficulties in accessing these data. Paradoxically, these restrictions are occurring at the same time as the open science movement, which encourages data sharing to improve the rigour, transparency, and replicability of research. We describe the urgency of
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... ts to data access and propose solutions from a mental health research perspective, although the issues discussed extend to all areas in which analysis and linkage of health data support policy and practice. Actions are needed at every level, from data users and data custodians to government (panel). Administrative datasets permit researchers to explore real world experiences, antecedents, and outcomes. Furthermore, record linkage to administrative data enhances the utility of research datasets and supports study of mental health over the life course. 1 NHS England provide aggregated statistics on their website, but accessing patient-level data, necessary for epidemiological data analysis, requires approved researcher status and application through the Data Access Request Service, a process that researchers are reporting to be prone to increasing delays. Processes to access data have become longer and more complex, often requiring considerable perseverance, which we describe in detail in our survey (appendix pp 9-27). Despite overarching European and UK legislation, access also differs considerably between data custodians, with substantial variations in the application of legislation between the UK nations (appendix pp 2-8). A major consideration is whether the data requested are identifiable. Since May, 2018, the General Data Protection Regulation (GDPR) has provided a strict legal framework for data protection across Europe; health data are considered special category data (highly sensitive). The GDPR sets out lawful bases for processing identifiable data; scientific research does not always need to rely on consent and is potentially exempt from one or more obligations set out by the GDPR, considered on a case-bycase basis when certain criteria can be documented.
doi:10.1016/s2589-7500(21)00078-9
pmid:34044999
fatcat:z7kg25ty4jbppnpw2n7k6cvxk4
