The e-health revolution has begun with a whimper. As Associate Professor Craig Fry writes below, the lack of public awareness about the introduction of such a far-reaching development is a shame.
The low-key approach also appears to be part of a quietly-quietly tactic by the Federal Government. That stems partly from the delay and snag-prone nature of the national e-health project which has been promised for the past decade, sucked in many hundreds of millions of dollars and not yet shown much return.
The delicate issue of patient privacy and the big brother overtones of a national patient record system, which encouraged the Government to make it an opt in rather than opt out scheme, also explains the lack of popular engagement with this revolution.
On the basis of troubled experience in other countries’ e-health developments, a hesitant start may have some virtue.
But the Government’s small-target approach means the transformational benefit of e-health is struggling to reach enough Australians.
Unresolved ethical issues for new e-health system
Craig Fry writes:
Back in July 2012 the Australian Government launched its new National e-health record system to make elements of each person’s health and medical history available electronically. The $467 million system was developed by the National E-Health Transition Authority.
But the launch of this landmark e-health initiative passed quietly, save for some sporadic and mostly negative media coverage in some outlets.
I did a straw poll recently of my family, friends, and colleagues about the National eHealth Record System. Very few of them were aware that they could register right now for their own personally controlled electronic health record.
And it appears this lack of awareness is widespread. While the government hasn¹t released official figures yet about the general public¹s uptake of the eHealth system, the inside word is that only around 20,000 records have been created to date.
This is hardly an inundation from a population of some 22 million. This apparent lack of interest is a shame for two reasons.
First, the potential benefits of Australia’s new e-health system are significant. The system is expected to assist in achieving reductions in medical errors, improved management of chronic diseases, better health outcomes, more informed patients, and enhanced health policy and planning.
Second, the process of creating a personal electronic health record online is surprisingly easy. It took me under 20 minutes to complete the three register-verify-create steps using my Medicare and other personal details.
The potential value of a personal eHealth record is very clear when you look at your own freshly created record online. There is a shared health summary section which can store key points about your health and medical history, and other sections for clinical documents (e.g. discharge and other clinical summaries) a useful resource and potential time saver in future consultations and emergencies.
Each record also has sections that can house information on Medicare subsidised visits, PBS and RPBS prescriptions, childhood immunisations, and organ donation preferences. There is also a personal section of the e-health record where you can enter personal health notes, advance care directives, and other personal and emergency contact details.
But the main point here is that the future worth of these records will ultimately depend on whether the healthcare providers that eHealth record owners visit are registered in the National eHealth Record System, and the decisions record owners make about who they share their personal eHealth records with and in what circumstances.
Uptake and access are key
Granted, the modest rates of eHealth system uptake we are currently seeing might be due to lack of awareness in the population. The government’s soft launch in July 2012 was hardly a bells and whistles affair. There was no national public education and awareness raising campaign to promote the new system.
But there are other factors also likely to influence e-health record uptake patterns, and the decisions that eHealth record owners make about who gets access to their online records in this country.
For example, doctors have raised concerns about clinical decision-making based on records that may be out of date, and have criticised the utility of the government scheme of incentive payments to encourage practices to register in the new eHealth system.
Consumer groups have also highlighted concerns about privacy issues.
The results from research conducted by my colleagues and I help to reveal other important unresolved issues that could potentially limit the uptake and success of Australia’s eHealth Record System.
Our review of the NEHTA process in developing the National eHealth Record System revealed a number of unresolved ethical issues that deserve closer consideration. These issues include:
* Issues of health literacy and equity around e-health record access and uptake
* Need for guidelines on the appropriate uses of e-health record data in future research
* Questions of consent and confidentiality in the context of parental control and access of child and adolescent records
* Conflicting public-private-commercial interests around record access and use
* Adequacy of engagement, consultation and cultural diversity processes in developing the new e-health system.
We should learn here from the difficulties encountered with the UK electronic health record system,
which some experts attributed in part to the failure of government developers to adequately consider relevant
ethical issues alongside the usual technical and designmatters.
Examples of significant health innovations like our new National eHealth Record System necessarily require technical deliberations about a range of practical, legal, clinical, scientific, and financial questions. These issues were examined thoroughly by the National E-Health Transition Authority in developing the system currently being implemented.
But due attention should also be given to the relevant ethical questions that arise in the context of health innovations. To date however, NEHTA’s consideration of the ethical implications of e-health advances in Australia has been inadequate.
A continuing failure to address key ethical issues in the implementation and utilisation of the National eHealth Record System could limit its uptake and success in this country, and is also not without risks to future participants of the system.
Associate Professor Craig Fry is an NHMRC Career Development Fellow in e-health ethics at the Centre for Cultural Diversity and Wellbeing, Victoria University. He is also Principal Fellow, Centre for Health & Society, School of Population Health Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne