From July 1 2012, Australians will be able to register for their own Personally Controlled Electronic Health Record (PCEHR). At least this was what Rosemary Huxtable, deputy secretary of the department of health and ageing has reaffirmed to a parliamentary senate committee. At that point, $467m will have been spent on the project.
To say that the project has its doubters and critics would be an understatement. The Medical Software Industry of Australia (MSIA), the Australian Medical Association (AMA) and the Consumers e-health Alliance are among the many groups that spoke to the senate committee about their concerns regarding the implementation of the PCEHR. Their complaints are varied and range from privacy, to governance and liability, through to doubts about whether anyone would actually use the system.
Interestingly, advocates and critics both agree on the potential usefulness of electronic health records to improve patient outcomes and increase the potential efficiency of health services – even though evidence is scant that electronic health records, in and of themselves, improve the quality of care.
Leaving aside the question of the actual likelihood of the system being operational by July 1 2012, the question is, what exactly will we have and will it bring about significant improvements in the Australian health system?
What is a PCEHR?
The PCEHR will potentially allow consumers to have access to a summary of their medical information including medications, medical history, information about allergies and adverse drug reactions and letters and documents. This information is supposed to come from a range of health providers, such as GPs, specialists and hospitals.
The promise of a person having access to their health information held by others is alluring. The fact that we can’t look up when we, or a child, had a vaccination or were given a medication or had an X-ray is a reflection of how far behind technology the health industry is than say, banking. Of course, some health-care organisations, such as Kaiser Permanante in the United States have done exactly this, providing not only an electronic record; they have gone further by allowing customers to interact with their doctors using secure messaging and to make appointments electronically.
If you build it, they will come
The difficulty with summary records, such as the PCEHR, comes with trying to use the information as anything other than a precis, especially in the case of shared care. Professor Enrico Coiera of the University of New South Wales has argued that summary records have little clinical value.
The experience of summary records in the United Kingdom showed low levels of adoption. Like Australia’s PCEHR, it was an “opt-in” system requiring an arduous verification process to sign up.
Opt-in systems are always going to struggle with adoption. Psychologists Johnson and Goldstein have showed that consent rates for organ donation in countries such as Germany, where the system requires people to opt-in, were 12% compared with Austria, which has an opt-out system, where rates are 99.98%.
And with low adoption comes low use. The UK’s personal electronic health record, HealthSpace showed that between 2007 and 2010, only 172,950 people opened a basic account, and 2,913 people opened an advanced account. Patients perceived HealthSpace as neither useful nor easy to use.
Google recently shut down its personal electronic health record Google Health. The company found it difficult to engage people beyond the small group of technologically savvy patients and fitness fanatics.
The reasons why users will end up using any information technology system are varied and complicated but research has shown that the benefits of the system are a key driver. If the benefits are there, they will outweigh even privacy concerns. With a summary record, the benefits are so few that issues such as privacy, governance and liability become disincentives to using the system.
A single, shared electronic health record
In contrast to a summary record like the PCEHR, the Kimberley Aboriginal Medical Services Council (KAMSC), in collaboration with The University of Western Australia, is using a web-based electronic health record called MMEx for 22,000 mostly Aboriginal people in the Kimberley region of Western Australia.
With a patient’s consent, the record can be shared with the hospitals, visiting specialists and allied and mental health professionals. All care plans, medications and communications concerning the patient are electronic.
The difference between this approach and the PCEHR is that everyone is working off the same record. Practitioners have to work collaboratively, because their changes are immediately seen by everyone involved in the care of the patient. Combined with telehealth services, this means that care can be provided consistently through the Department of Health WA, KAMSC and the private sector.
This project was unique enough for the OECD to include it in a review of global e-health projects.
PCEHR – the benefits
It is possible that the PCEHR will be operational in some form by July 1 2012. The companies building the customer-facing component (Accenture, Oracle and Orion Health) were involved in delivering a more extensive e-health record project in Singapore last year.
Of more importance however is that Australia will be left with major portions of legislation and infrastructure that will benefit all e-health projects. This includes a system that provides a unique health-care identifier for each patient and health-care provider. It also includes standards that specify how different systems will talk to each other and a way for all people accessing these systems to be authenticated.
It is very unlikely that the PCEHR will revolutionise health care in Australia any more than its equivalent did in the United Kingdom. From an e-health perspective, this will only come from a single shared electronic health record with clinical protocols and governance that allow health providers to collaborate with a patient in managing their health and wellbeing. But, hopefully, the steps taken in the PCEHR project will accelerate that process in Australia.