Abstract
Motivation: The data that put the ‘evidence’ into ‘evidence-based medicine’ are central to developments in public health, primary and hospital care. A fundamental challenge is to site such data in repositories that can easily be accessed under appropriate technical and governance controls which are effectively audited and are viewed as trustworthy by diverse stakeholders. This demands socio-technical solutions that may easily become enmeshed in protracted debate and controversy as they encounter the norms, values, expectations and concerns of diverse stakeholders. In this context, the development of what are called ‘Data Safe Havens’ has been crucial. Unfortunately, the origins and evolution of the term have led to a range of different definitions being assumed by different groups. There is, however, an intuitively meaningful interpretation that is often assumed by those who have not previously encountered the term: a repository in which useful but potentially sensitive data may be kept securely under governance and informatics systems that are fit-for-purpose and appropriately tailored to the nature of the data being maintained, and may be accessed and utilized by legitimate users undertaking work and research contributing to biomedicine, health and/or to ongoing development of healthcare systems.Results: This review explores a fundamental question: ‘what are the specific criteria that ought reasonably to be met by a data repository if it is to be seen as consistent with this interpretation and viewed as worthy of being accorded the status of ‘Data Safe Haven’ by key stakeholders’? We propose 12 such criteria.Contact: paul.burton@bristol.ac.uk
Highlights
1.1 Data in societyWe live in a data-rich and increasingly information-driven world, and society is rapidly responding to the opportunities and challenges this presents (Davies et al, 2002; Shaw, 2014)
This review explores a fundamental question: ‘what are the specific criteria that ought reasonably to be met by a data repository if it is to be seen as consistent with this interpretation and viewed as worthy of being accorded the status of ‘Data Safe Haven’ by key stakeholders’? We propose 12 such criteria
Appropriate protection of individually identifying data simplifying data access, but provided they are compliant with the key criteria, and are fit for purpose examples from all classes might reasonably be viewed as Data Safe Havens
Summary
We live in a data-rich and increasingly information-driven world, and society is rapidly responding to the opportunities and challenges this presents (Davies et al, 2002; Shaw, 2014). ‘a protected space under the control of an independent clinician’ (Anderson, 1996); secure environments, limited to small numbers of users, in which data are managed, quality is assessed and linkage between records can take place (NHS Research Capability Programme, 2008); and a means ‘to ensure the safety and secure handling of confidential patient identifiable information’ (NHS Connecting for Health, 2009); (ii) a more generic term, subsuming for example the Data Safe Haven at University College London, that implies ‘a designated physical or electronic area that provides the most appropriate level of security for the use of the most sensitive and confidential information’ (Care Record Development Board, 2007), or ‘an environment for populationbased research and statistical analysis in which the risk of identifying individuals is minimized’ (Thomas et al, 2008) or a ‘physical environment where access to disclosive data can be controlled’ (Administrative Data Taskforce, 2012); and (iii) specialist secure settings in which data can be analysed—either locally, or remotely via secure privacy protecting mechanisms, but cannot physically be removed from that setting (Lyons, 2009 #5082; Administrative Data Taskforce, 2012 #5799; Academy of Medical Sciences, 2014 #5787; Jones, 2014 #5821) NHS-Scotland National Safe Haven (http://www.adls.ac.uk/nhs-scotland/nhs-scotland-national-safehaven/) In this third category, it should be noted that the OECD microdata report uses the terms ‘data enclave’ or ‘safe centre’ for the specific case of ‘a facility equipped with computers not linked to the internet or an external network and from which no information can be downloaded via USB ports, CD-DVD or other drives’ (OECD Expert Group for International Collaboration on Microdata Access, 2014). To begin, we describe the phenomenon that we understand to provide the contextual underpinning for discussion of Data Safe Havens: the data pipeline
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