“Whose data is it anyway?” The implications of putting small area-level health and social data online

Abstract

a b s t r a c tData from electronic patient management systems, routine national health databases, and social administrative systems have increased significantly over the past decade. These data are increasingly used to create maps and analyses communicating the geography of health and illness. The results of these analyses can be easily disseminated on the web often without due consideration for the identification, access, ethics, or governance, of these potentially sensitive data. Lack of consideration is currently proving a deterrent to many organisations that might otherwise provide data to central repositories for invaluable social science and medical research. We believe that exploitation of such data is needed to further our understanding of the determinants of health and inequalities. Therefore, we propose a geographical privacy-access continuum framework, which could guide data custodians in the efficient dissemination of data while retaining the confidentiality of the patients/individuals concerned. We conclude that a balance of restriction and access is needed allowing linkage of multiple datasets without disclosure, enabling researchers to gather the necessary evidence supporting policy changes or complex environmental and behavioural health interventions.

Understanding value in health data ecosystems: A review of current evidence and ways forward

“…This is a project using interactive mapping software to better understand and detect geographical determinants of health such as deprivation, lifestyle and environmental factors (Exeter 2014).…”

“…The literature points to a diversity of benefits from using health data for enhancing care quality through better clinical decision--making and workforce capabilities. Belle et al (2015), Couillard et al (2015), Exeter (2014) and Mirnezami et al (2012) consider prospects for better diagnostic capabilities which would draw on big data from a diversity of databases, such as data correlating diseases and diverse symptoms with different patient profiles. For example, new developments such as multidimensional signatures 9 could enable higher predictive power (e.g.…”

Are patient relationships the driver for information governance?

“…Researchers and commissioners must comply with statutory law which focuses on data protection and the need to de-identify information or seek consent. Yet anonymity cannot be guaranteed 6 and the requirement for consent as enshrined in the Common Law Duty of Confidentiality may be set aside by statute. 7 Confidentiality can be further protected by limiting disclosure outside of the care setting at the expense of data utility 8 -but is that enough to protect the Again, whereas confidentiality is the driver for protecting the relationship between doctor and patient at a human level, information governance acts as a driver for protecting data at the digital processing level.…”

Charting Disaster Recovery via Google Street View: A Social Science Perspective on Challenges Raised by the Fukushima Nuclear Disaster

“…Kasperson et al (2001) warn of the influence large organizations have on the context and terms of contemporary societal debates on risk. With Exeter et al (2014) reminding us that GSV is ultimately a commercial product, somewhat missing from much of this GSV-specific research is consideration of how sociopolitical forces may influence what we can and cannot see. For instance, Zook and Graham (2007) argue the ranking algorithms and mechanisms used to order search results in Google Maps more widely may not be as ''objective'' as one might be led to believe; these ranking techniques may reflect underlying economic, social, and cultural imperatives that are not outwardly visible on the map.…”