Kerina H Jones1, Graeme Laurie2, Leslie Stevens2, Christine Dobbs3, David V Ford3, Nathan Lea4. 1. Data Science, Swansea School of Medicine, Swansea University, Swansea SA2 8PP, UK. Electronic address: k.h.jones@swansea.ac.uk. 2. School of Law, University of Edinburgh, Old College, South Bridge, Edinburgh EH8 9YL, UK. 3. Data Science, Swansea School of Medicine, Swansea University, Swansea SA2 8PP, UK. 4. Centre for Health Informatics, University College London, Gower Street, London WC1E 6BT, UK.
Abstract
INTRODUCTION: It is widely acknowledged that breaches and misuses of health-related data can have serious implications and consequently they often carry penalties. However, harm due to the omission of health data usage, or data non-use, is a subject that lacks attention. A better understanding of this 'other side of the coin' is required before it can be addressed effectively. APPROACH: This article uses an international case study approach to explore why data non-use is difficult to ascertain, the sources and types of health-related data non-use, its implications for citizens and society and some of the reasons it occurs. It does this by focussing on issues with clinical care records, research data and governance frameworks and associated examples of non-use. RESULTS AND DISCUSSION: The non-use of health-related data is a complex issue with multiple explanations. Individual instances of data non-use can be associated with harm, but taken together, they can describe a trail of data non-use that may complicate and compound its impacts. There is ample indirect evidence that health data non-use is implicated in the deaths of many thousands of people and potentially £billions in financial burdens to societies. CONCLUSIONS: Harm due to the non-use of health data is difficult to attribute unequivocally and actual proven evidence is sparse. Although it can be elusive, it is nevertheless a real problem with widespread and serious, if largely unquantifiable, consequences. The most effective initiatives to address specific contexts of data non-use will be those that: firstly, understand the pertinent sources, types and reasons for data non-use in a given domain in order to meet the challenges and create appropriate incentives and repercussions; and secondly, are cognisant of the multiple aspects to this complex issue in other domains to keep benefits and limitations in perspective, to move steadily towards socially responsible reuse of data becoming the norm to save lives and resources. Copyright Â
INTRODUCTION: It is widely acknowledged that breaches and misuses of health-related data can have serious implications and consequently they often carry penalties. However, harm due to the omission of health data usage, or data non-use, is a subject that lacks attention. A better understanding of this 'other side of the coin' is required before it can be addressed effectively. APPROACH: This article uses an international case study approach to explore why data non-use is difficult to ascertain, the sources and types of health-related data non-use, its implications for citizens and society and some of the reasons it occurs. It does this by focussing on issues with clinical care records, research data and governance frameworks and associated examples of non-use. RESULTS AND DISCUSSION: The non-use of health-related data is a complex issue with multiple explanations. Individual instances of data non-use can be associated with harm, but taken together, they can describe a trail of data non-use that may complicate and compound its impacts. There is ample indirect evidence that health data non-use is implicated in the deaths of many thousands of people and potentially £billions in financial burdens to societies. CONCLUSIONS: Harm due to the non-use of health data is difficult to attribute unequivocally and actual proven evidence is sparse. Although it can be elusive, it is nevertheless a real problem with widespread and serious, if largely unquantifiable, consequences. The most effective initiatives to address specific contexts of data non-use will be those that: firstly, understand the pertinent sources, types and reasons for data non-use in a given domain in order to meet the challenges and create appropriate incentives and repercussions; and secondly, are cognisant of the multiple aspects to this complex issue in other domains to keep benefits and limitations in perspective, to move steadily towards socially responsible reuse of data becoming the norm to save lives and resources. Copyright Â
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