Big data  + politics = open data: The case of health care data in England

Abstract

There is a great deal of enthusiasm about the prospects for Big Data held in health care systems around the world. Health care appears to offer the ideal combination of circumstances for its exploitation, with a need to improve productivity on the one hand and the availability of data that can be used to identify opportunities for improvement on the other. The enthusiasm rests on two assumptions. First, that the data sets held by hospitals and other organizations, and the technological infrastructure needed for their acquisition, storage, and manipulation, are up to the task. Second, that organizations outside health care systems will be able to access detailed datasets. We argue that both assumptions can be challenged. The article uses the example of the National Health Service in England to identify data, technology, and information governance challenges. The public acceptability of third party access to detailed health care datasets is, at best, unclear.

Governments and Citizens Getting to Know Each Other? Open, Closed, and Big Data in Public Management Reform

“…Government officials may have cause to fear the open data agenda with its potential to bring “severe performance regimes” by highlighting raw variation in the performance of public sector agencies, such as schools, hospitals and so on, without accounting for the underlying differences in constituency demographics (Shadbolt, ). Some commentators have suggested that open data when transported to some contexts—specifically, public healthcare systems—represents a revival of NPM reform, with its capacity to facilitate marketization and to provide easily visualized, empirically based (although potentially misleading) league tables of hospitals and individual healthcare professionals, even associating open data with “neoliberalism in practice,” arguing that it reinforces contract relationships between state and private sector actors, and does so by weakening the positions of both citizens/patients and clinicians vis‐à‐vis their governments (Keen, Calinescu, Paige, & Rooksby, , p. 9).…”

The vestiges and vanguards of policy design in a digital context

“…The potential for real‐time, anywhere government‐to‐citizen communication has also raised interest in behavioral economics—more specifically, “nudge” (Behavioural Insights Team ; Charney ; Thaler ) approaches to social problem solving—and for gamification (King et al ; McCall, Koenig, and Kracheel ). Here, socially desirable citizen behaviour is incentivized through information cues, reducing the need for direct state intervention via “carrots and sticks.” In addition to these “information pushes,” governments are also turning to the social web for “information pulls,” collecting big data—large‐scale, unmediated and unstructured data—describing citizen behavior and preferences, as reflected in their interactions online, in order to inform more evidence‐based and/or democratically responsive policy development processes and service delivery improvements (Clarke and Margetts ; Keen et al ; Manyika et al ; Rutter ).…”

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

“…Efforts to raise awareness on the potential of health data and on appropriate safeguards for its use need to be rooted in clear, well--targeted and comprehensive communication strategies (Hood & Auffray 2013;INT01-03;Keen et al 2013;Kshetri 2014). For example, the challenges in achieving public acceptability and trust have been made explicit in the experience of trying to implement the care.data effort in England.…”