Sunday, February 23, 2014
One Of The First Academic Reviews Of the PCEHR So Far Has Now Appeared. Lots Of Useful Insights Here.
I was alerted to this paper by one of the authors this week:
Garrety, K., McLoughlin, I., Wilson, R., Zelle, G. & Martin, M. (2013). National electronic health records and the digital disruption of moral orders. Social Science and Medicine, 101 70-77.
The digitalisation of patient health data to provide national electronic health record systems (NEHRS) is a major objective of many governments. Proponents claim that NEHRS will streamline care, reduce mistakes and cut costs. However, building these systems has proved highly problematic. Using recent developments in Australia as an example, we argue that a hitherto unexamined source of difficulty concerns the way NEHRS disrupt the moral orders governing the production, ownership, use of and responsibility for health records. Policies that pursue digitalisation as a self-evident 'solution' to problems in healthcare without due regard to these disruptions risk alienating key stakeholders. We propose a more emergent approach to the development and implementation of NEHRS that supports moral re-ordering around rights and responsibilities appropriate to the intentions of those involved in healthcare relationships.
The direct link to the full paper is here:
This discussion section says it all - and very clearly indeed
Discussion: digital disruption, intentions and the ‘meta’ moral ordering of NEHRS
The difficulties that policymakers in many nations have experienced in their attempts to introduce NEHRS can be traced to a ‘dangerous enthusiasm’ for technology-driven fixes to complex social problems (Gauld & Goldfinch, 2006). In their enthusiasm for NEHRS as a ‘solution’ to rising healthcare costs and increasing demand, policymakers focus on a version of digitalisation that assumes its worth is self-evident to both consumers and providers. The moral complexities surrounding the digital collection and sharing of health data – manifested for example in concerns over privacy and confidentiality – are treated as secondary problems that can be tidied up through the post hoc development of new procedures governing consent and access. As the experience in Australia illustrates, however, in practice these complexities are not so easily managed.
Instead of placing faith in technology, we suggest that policymakers need to recognise and understand the intentions of the multiple stakeholders involved in arenas such as healthcare before digitalisation is attempted. What we have in mind here is the facilitation of what might be termed a ‘second order’ or ‘meta’ mode of moral ordering whose purpose is to nurture collective and dynamic re-ordering among actors in a conscious attempt to identify, work through and rethink the rights and responsibilities that are appropriate for supporting the intentions of those who produce and use information to deliver care. This would involve much more than simple truncated ‘consultations’ around details of a pre-specified design, such as those that occurred in Australia in the lead up to the PCEHR. In the latter case, the ‘consultations’ inhibited exploration of the system's utility in the eyes of providers and consumers and instead fed concerns over privacy and governance.
Meta-ordering, on the other hand, would involve sustained interaction around ‘boundary objects’ such as prototypes and pilot trials, to allow the possibilities opened up by digitalisation to be explored alongside their implications for established patterns of rights and responsibilities. Such multi-stakeholder engagement in dialogues that attempt to build consensus would inevitably be time-consuming, difficult and messy, but may ultimately be more productive than rushed implementations that fail to engage potential users. It would not require a ‘God's eye view’ or a pre-ordained endpoint towards which action is orchestrated, but rather a collective, facilitated journey that explores how things might be ordered differently. There are examples of such interactive re-orderings around shared electronic health record systems in Australia and Eng land, albeit in more localised contexts, that have generated productive results (see e.g. Garrety, Dalley,McLoughlin, Wilson, & Yu, 2012; Jenkings & Wilson, 2007; McLoughlin & Wilson, 2013).
Scaling such examples up to a national or whole system level clearly presents major challenges, as heavy up front investments in the infrastructure required to support systems of innovation are needed. As a report for one UK innovation ‘think tank’ recently argued, getting returns on such investments requires consider able parallel resources for building alliances and developing a common purpose around a recognition of what is of value in order to change behaviour (Leadebeater, 2013).
As this article is being completed, the new Coalition Federal Government in Australia has announced a review of the future of the PCEHR (Foo, 2013b). Whether this review provides a catalyst for actors in the arena to seek a common understanding by working through their currently divergent intentions remains to be seen. Our fear is that left to its own devices the debate will once again be reduced to another round of polarising discourse. To get beyond this, we should neither simply put our faith in what are assumed to be the self-evident benefits and utility of the digitalisation of health data; nor should we just resist the technology because of fears concerning threats to privacy and confidentiality. To make some progress we need to develop the basis for a better kind of conversation about electronic health records than this.
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To me a critical insight that we find here is that trying to use technology to solve what is essentially a multi-dimensional human, relational, informational and communications problem is probably naive and pretty much doomed before it starts.
The need for a rational discussion on what the problem actually is and how it should be addressed is well overdue!
Posted by Dr David G More MB PhD at Sunday, February 23, 2014