The road towards digital health records
The National Electronic Health Transition Authority proposals have sparked debate
By Professor Ian McLoughlin and Rob Wilson
The prospect of all Australians' health records being held on computer is resulting in a mainly counter-productive and increasingly polarised debate.
In one corner are the proponents of modernisation and patient choice. They extol the virtues of putting into digital form what has traditionally been held on paper or numerous individual computers and fragmented information systems. Now the promise - as confirmed by the National Electronic Health Transition Authority (NEHTA) last week - is of personally controlled electronic health records. These records, it is claimed, will enable improved service quality and patient choice whilst reducing waste and costs.
In the other corner are the critics who fear for patient privacy and ridicule the trust placed in the technology and the state to deliver what clinicians and patients really need. They point to the trouble electronic record schemes have got into overseas with program delays, legal disputes and cost blow outs. Some don’t like the NEHTA blueprint because it proposes a less centralised solution, doctor involvement is contingent and patients are seemingly to be given too much say.
We are engaged in a comparison of the Australian approach with the now 10-year-old program for a national ‘spine’ to support electronic records in the UK National Health Service (NHS). Contrary to recent comment, we observe that ‘down under’ some lessons have clearly been learnt from the mistakes made in the northern hemisphere.
For example, some have criticised NEHTA for not delivering a national database but rather proposing a system which will link separate and more locally held data together. We think: good call NEHTA. The UK program has floundered on how to sort out identity, privacy, security and other issues when information is centralised and can be accessed and shared by innumerable people.
The dangers of over-centralisation are at least recognised by NEHTA and it is more sensible to address access and other issues at the local level where the real care relationships exist. What is lacking, though, is any discussion of the governance arrangements through which questions such as ‘who has access to information over what, when and why and with whose consent?’ will actually be sorted out.
The UK program has also rightly been slated for the lack of involvement of clinicians in the specification of the systems procured. Guess what? The much-delayed systems now being delivered are not what the clinicians and hospitals say they need. The NEHTA proposals, on the other hand, seem to leave plenty of ongoing room for the user to have their say and get involved in both specifying systems and shaping the environment in which they will be used.
However, it is important here that ‘the user’ includes not just doctors, nurses and patients. The myriad other care providers beyond the hospital also need to be taken into account. These include the voluntary and community sector, family members and so on – in other words the agencies and people who get involved, for example, when an older person is discharged.
All the go in modernising public services at the moment is the idea of co-production as a means of managing change in these relationships. That is where communities of users and providers design and shape services together with technology suppliers – a live conversation not a dialogue of the deaf.
By avoiding a blueprint for putting what technology suppliers think users want into a central database, or allowing what is good for clinicians but possibly not everyone else to dominate, NEHTA have at least left the space for all those involved in patient care to co-produce the solutions that work best for them. In our experience this is key. Many of the best ideas for service innovation come up in care communities as they try to use new systems to do new things.
The NEHTA proposals are far from perfect. As critics have pointed out, they may well have their problems in relation to detail on technical matters and implementation. But the blueprint now unveiled does have its merits. There is at least the prospect of governance and relationship management being properly thought through. If so, what we have here is a ‘better mistake’ than the current debate would have us believe.
Professor Ian McLoughlin (Monash University) and Rob WIlson (Newcastle University, UK) are working on an Australian Research Council funded Discovery Project with colleagues from Wollongong University on a study of electronic health record policy and practice in Australia and the UK.