The My Health Record (MHR) system promises to make Australia a leader in providing citizens with access to their own health records.
The scheme gives health care professionals access to information on your medications and allergies, immunisation records, summaries of hospital and GP care, investigation reports, and advance care plans.
This information could save lives in emergencies by providing health workers with information about drug allergies, medications, and medical history. Better continuity in the management of this information would help reduce the 27% of clinical incidents in Australian hospitals currently caused by medication (mis)management.
The system had a rocky start
Launched in 2012 as the Personally Controlled Electronic Health Record (PCEHR), the system was plagued by technical failures and cost overruns. Take-up was low.
After five years, only 20% of consumers had opted in. Even more seriously, there was limited interest from health professionals – particularly GPs and pharmacists who deal with patients most often.
Faced with the low patient take-up and limited training or information, health professionals saw little reason to waste time on an unwieldy system.
This mirrored international experience. Many countries suffered expensive disasters in building e-health systems from the top down. E-health appeared to serve the interests of administrators, not clinicians and patients.
Not surprisingly, patients showed little interest. British critics of a similar expensive failure warned:
We need fewer grand plans and more learning communities.
The Australian experience has run the full gamut from failed top-down “grand plan” to a version that is more responsive to consumers and health professionals.
Linking up the fragmented health system
Large trials in the Nepean-Blue Mountains and North Queensland Primary Health Networks tested a more user-friendly system. In both trials, the opt-out rate was low: less than 2%. The engagement of clinicians also increased.
In the Blue Mountains fewer than 15% of GPs had registered with the PCEHR. By the end of the trial, with extensive education and training, this figure has risen to 70%.
MHR offers new possibilities for linking up the fragmented health system, making it easier to navigate. Just as importantly, it can help you to become more informed and engaged with your own health care. And better health literacy is a necessary step in shifting the balance of the system towards patients.
The Consumers’ Health Forum – a supporter of MHR – has stated that patients are:
…more likely to give permission to share their data if they understand how their data will be used and any benefits that will come from its use.
However, active participation in MHR will remain a challenge for many people, especially those who struggle with digital literacy.
Addressing security concerns
Any system that contains health information must be built on trust. Most of the criticisms of MHR rest on fears of inappropriate use or hacking of data.
However, critics have not pointed to any breach of the PCHR in its five years of operation. Rather, examples are often drawn from commercial operations which have succumbed to the temptation to commercialise data – an offence that could lead to prison under MHR.
Uncertainty is inherent in many facets of modern life, such as the use of credit card information for online purchases. Most surveys of popular attitudes towards the use of digital health information has shown a consistent, but nuanced concern.
Concerns identified in the two major trials were mainly focused on individuals’ lack of computer skills. But almost all consumers thought the benefits greatly outweighed any potential privacy risks.
The system will only succeed if concerns about protection of confidentiality are respected. A weak link is the digital skills and awareness of health practitioners, particularly GPs.
A large amount of health data is already out there in Medicare Benefits Schedule (MBS) and Pharmaceutical Benefits Scheme (PBS) data, the Australian Immunisation Register, and the Australian Organ Donor Register. These data are increasingly linked together, with great potential benefits. Data from Medicare, hospital records and other sources can be linked to improve our knowledge of causes of diseases and risk factors, and the best forms of intervention.
MHR is a step toward empowering patients
Our health system suffers from a deficit of transparency. Patients are locked out of knowledge of how the system works – from the confusion around private health insurance plans to undisclosed out-of-pocket costs for medical procedures.
Rather than protesting about a horse that has long since bolted, we need more scrutiny and improvement of current systems.
MHR is a small step towards empowering patients with greater knowledge about their health. Pressures to present records in terms that are comprehensible to consumers may even take us towards interactive “learning communities” – the basis of a more people-centred health system. Better-informed patients can enable more effective communication and mutual learning from health professionals.
If you choose not to opt out of MHR, a record will be created for you automatically. You can log into the system here to set controls on who has access to your data and set restrictions on the types of data that will be included. You can change your mind at any time and close access to your data.
Authors: Jim Gillespie, Deputy Director, Menzies Centre for Health Policy & Associate Professor in Health Policy, University of Sydney