A blueprint to move patient records into the 21st century

Patient records should be accessible when are where they’re needed. Rosser

In an age of electronic banking and on-line shopping, Australians might be surprised when they go into a hospital to see that paper records still exist in an otherwise high-tech health care system. Perhaps even more surprising, and even worrying, is that the digitisation of full patient records is still a few years off.

Picture this alternative scenario:

You live in Melbourne and you feel chest pains while holidaying in Port Douglas. You go to a local hospital and medical staff enter your personal identifier (contained in a chip on your Medicare card) into their computers. Your medical history, aided by a super-fast national broadband network (NBN), immediately comes up on screen.

Armed with vital information about your condition – previous test results, treatments and current medication – the doctors decide to admit you for observation.

Details of your hospital visit are added to your record for future reference. And information about your admission becomes data that determines where future resources are deployed across the nation’s hospitals.

This is the kind of “revolution in health care delivery” that the Government envisages after the introduction of electronic health records (and the NBN).

The idea of electronic health records first came at a meeting of Australian health ministers at the dawn of the Internet. And last month we moved closer to its realisation, with the government’s National Electronic Health Transition Authority (NEHTA) releasing a blueprint for the introduction of personally controlled electronic health records.

The government is now seeking feedback on the report and we’re seeing the supporters promote the virtues of “e-health” and the NBN, while critics of various shades line up to oppose the blueprint.

Improving access to patient records

In one corner is the Government and other proponents of modernisation and patient choice.

They extol the virtues of putting into digital form medical records that have traditionally been held on paper or local individual computers and fragmented information systems.

They want these digital records to be wherever they’re needed – to improve service quality and patient choice, while reducing waste and costs.

We’re told that the health service consumer will be able to choose what goes on the record and what does not. Most important of all, the consumer will also decide who sees the information.

The consumer – and those others they give permission to, such as their doctor – will be able to view the record “anywhere, anytime”.

Privacy fears

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: program delays, legal disputes and cost blow outs.

Some critics don’t like the NEHTA blueprint because it proposes a less centralised solution in which patients seem to be given too much say and doctor involvement is not mandatory.

Lesson learnt in the UK

Our research has looked extensively at these kinds of issues in the United Kingdom and in Europe. We are now comparing the Australian approach with the 10-year-old program for a national “spine” to support electronic records in the UK National Health Service (NHS).

Contrary to recent comment, Australia’s electronic health planning has learnt from the mistakes made in the northern hemisphere.

For example, rather than developing a national database to store all Australians’ health information, NHETA favours linking separate and more locally-held data together. Some have criticised this proposal for decentralised information but it is clear that the UK program has floundered on its more centralised approach.

How to sort out identity, privacy, security and other issues when information is centralised and can be accessed and shared by innumerable people has proved intractable. And not just in health – it’s also been problematic for projects such as the national identity card, which has now been abandoned.

When considering these failures, NEHTA’s recommendation for a de-centralised and federated option for information-sharing is a good call, but raises other issues.

What is lacking in NEHTA’s blueprint, for instance, 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 be addressed.

Clinician involvement

The UK program has also rightly been criticised for the lack of involvement of clinicians in the specification of the systems procured. The result is that the e-health systems now beginning to be delivered are not what the clinicians and hospitals say they need.

The NEHTA proposals, on the other hand, are based on the “users” of the e-health system having a say in the program’s development. That means the doctors, nurses and patients will be consulted about what they need and how they’d like to access the system.

It’s important, though, that “the user” includes the myriad of other care providers beyond the hospital (the voluntary and community sector, family members and so on). In other words, the agencies and people who care, say, for an older person after discharge from hospital need to be involved.

Many of the best ideas for service innovation come up in care communities as they try to use new systems to do new things.

Next steps

The NEHTA proposals are far from perfect. And as critics have pointed out, there may be some technical and implementation details lacking.

But the blueprint provides a basis from which to begin these much-needed e-health improvements. Contrary to some of the arguments pitted against the development of personalised health records, there is nothing inherently wrong with the digitisation of patient records.

The key is to ensure the governance arrangements for information sharing and the new services that these enable are right. To do that, all users and not just the “expert few”, need to be involved in shaping the health care system of the future.