Emma McBride (Dobell, Australian Labor Party) Share this | Hansard source

I rise to speak on the My Health Records Amendment (Strengthening Privacy) Bill 2018. This bill responds to the public's concerns over aspects of My Health Record and does make a number of changes which Labor welcome. But we don't think it has gone far enough. Labor will support this bill in the House but note that it has been referred to the Senate Community Affairs Committee to consider whether this bill adequately deals with the public's privacy and security concerns or whether further amendments are needed. The inquiry is due to report on 8 October.

Labor supports e-health and the concept of the My Health Record, which is why Labor began delivering an electronic health record system when we were last in office. I will focus my remarks today on the benefits of a properly delivered digital personal health record system from the perspective of a pharmacist. My Health Record, as James Grant, a pharmacist working in informatics and electronic medicines management, points out in his editorial for GRIT, the journal of hospital pharmacists of Australia, is basically a high-tech manila chart medical record, which means health professionals are able to read and contribute to a single longitudinal medical and medication history of the patient. Comparable systems have been effectively and safely rolled out elsewhere. I first saw an integrated digital system in action in Sweden in 2006, and over a decade later we're yet to realise the benefits in Australia.

Pharmacists and their representative bodies have been strong and consistent advocates for integrated digital health records for many years. This is because we know the risks associated with gaps in information, particularly in emergencies. As Professor Michael Dooley, President of The Society of Hospital Pharmacists of Australia, of which I am a member, said recently:

The Society of Hospital Pharmacists of Australia (SHPA), alongside many other health organisations, has advocated for the integrated use of electronic health records for many years. As pharmacists working in hospitals we are well aware of the risks faced by patients which can occur when there are gaps in the timely provision of information between medical, allied health and pharmacy services. This is particularly true during emergency admission to hospital and often when patients return from hospital to care in the community. These gaps can contribute to reduced health outcomes for Australians.

Pharmacists were some of the first health practitioners in Australia to become computerised in their practice settings. I know from my experience, with 20 years as a registered pharmacist, the benefits that a properly delivered digital personal health record system would provide to patients, carers, health practitioners, the wider community and government.

The potential for better health outcomes and cost savings is significant. A 2013 report found that medication misadventure led to 230,000 hospital admissions, costing the Australian health system more than $1.2 billion annually. That's separate to the impact on the person or their family. This stacks up with earlier 2012 modelling which estimates the net benefits from digital health records could save $11.5 billion over 15 years, with close to 90 per cent of the expected savings coming from reduced avoidable hospital admissions and more effective medication management—a fundamental role for pharmacists.

I would like to outline a vital part of medication management performed by thousands of pharmacists across Australia multiple times a day in different practice settings: medication reconciliation. Medication reconciliation is defined as the formal process of obtaining and verifying a complete and accurate list of each patient's current medicines and matching the medicines that the patient should be prescribed to those that they are actually prescribed. Any discrepancies are discussed with the prescriber, and reasons for changes to therapy are documented.

Medication reconciliation is a four-step process. The first step is to obtain and document the best possible medication history, the second is to confirm the accuracy of the medication history, the third is to reconcile the history with prescribed medicines and follow-up discrepancies, and the final stage is to supply accurate medicines information when care is transferred. This strategy of medication management has been shown to improve medication safety and significantly decrease errors, which have an impact on the person and on the health system. This strategy is vital, particularly in emergencies or in situations of crisis, such as an unconscious patient being admitted to emergency; a child with a complex medical history in the absence of a parent or carer; or a person with a major mental health problem in crisis.

I worked as a mental health pharmacist for most of my working life, and one of the main roles that I performed was making sure that patients' medications on admission were accurately documented, that we had the most up-to-date information, and that this was then confirmed with other sources, whether it was their general practitioner, the facility that they might have been transferred from, or the patient's own medication in a dosette box or a Webster-pak. In reconciling the history with prescribed medicines and then following up any discrepancies, when you're doing this on a daily basis with patients in crisis inside a mental health facility, the benefits that an e-health record would provide cannot be overestimated. Having accurate, up-to-date, relevant information at your fingertips would make this process more efficient, more effective and safer. It will save lives. As Leonie Abbott from the SHPA Electronic Medication Management Leadership Committee points out:

Sifting through growing volumes of medicines information while caring for some of the most unwell patients is a daily challenge in hospital pharmacy, especially in emergency settings and during crucial transitions of care from hospital to the community when medication errors are most likely to occur.

As the Pharmaceutical Society of Australia, the peak body representing almost 30,000 pharmacists working in all sectors, outlined in its submission to the inquiry, a My Health Record would mean that a pharmacist in emergency could readily identify medication and medication-disease interactions, could identify necessary dose adjustments with respect to a person's kidney or liver function, and could identify potential and actual adverse medication effects by having a more complete picture of a person's medication history and regime. When I was working in Wyong Hospital in my electorate, one of the key roles of every pharmacist in the team was to do these medication histories on admission. The SHPA has a standard that these should be done within 24 hours of a patient being admitted, but with the high throughput in public hospitals, particularly in regional centres, that's not possible. E-medication or digital integrated records would mean that health practitioners, particularly under strain in regional or rural settings, would be able to have accurate, reliable, comprehensive information at their fingertips. This must be done properly.

As a pharmacist, I am proud of Labor's initiative in commencing the rollout of the electronic health record system when we were in last in government. As Professor Michael Dooley, the President of SHPA, said:

The widespread introduction of My Health Record is a good step towards timely access to the important information needed when making decisions regarding medicines. The progression of comprehensive electronic health record management will bring the provision and exchange of health information into this century. We are pleased to see the federal government has today committed to swiftly addressing stakeholder and community concerns about privacy through legislative and regulatory means. This will provide greater support to healthcare practitioners in providing the best possible care, and hopefully will reassure all Australians that electronic healthcare records are an essential part of receiving high quality health care in all settings.

Notwithstanding the hope of the SHPA and other pharmacy and health peak bodies, the very real risk, in my view, is that this government's mishandling of the My Health Record has undermined community confidence and participation in what should be a transformative health initiative. In particular, the government has failed to properly explain to the public the change to an opt-out system from an opt-in system and to enhance the privacy and data security features of the scheme to a degree consistent with the wider reach of an opt-out model. The benefit to both individuals and population health research are best achieved when a threshold participation is reached. This is an advantage of an opt-out as a default setting. However, if the public confidence in the system is compromised, as it has been, to the point where a significant number choose to opt out, these benefits will not be realised. Contributing to this risk is that, over the last five years, and the last few weeks, this government has consistently undermined the public's trust in government. The public simply do not believe that this government is on their side or that this government will protect their interests ahead of big business or big financial institutions. That is why workers have concerns that their health records could be made available to potential employers, and consumers are concerned that their health records could be made available to health and life insurance companies.

However, my interest in this issue is not to criticise the government. Rather, as a health professional and a member of the party which initiated the My Health Record, I want to see this system be given every chance to reach its full potential for individuals, for health practitioners, for the wider community, for government. In this regard, the news today that 900,000 Australians have already opted out is particularly concerning. Labor's position is that the government should suspend the opt-out period until all of the remaining privacy issues and security concerns are properly addressed and public confidence in this important health initiative is restored.

As I mentioned earlier, for the benefits of population health, there needs to be a threshold of participation in this, which is why the opt-out model is one that would work well if health practitioners had the information to properly inform patients and if people had the right information to make an informed decision about whether they opt out. What I'm particularly concerned about is that the mishandling of My Health Record could set back even further in Australia what could be a transformative initiative. As I mentioned earlier, comparable systems of integrated digital health records have been introduced in other parts of the world safely, where the security of data is robust, where privacy measures are strong, and where people have the confidence that they can provide their own health information and know that it's going to be appropriately handled and accessed, as is needed, by the appropriate person.

Recently I had the opportunity to have a demonstration of the My Health Record in a community pharmacy, Blooms pharmacy in Wyong. I was really pleased that the PSA has made a concerted effort to inform as many of their members or as many pharmacists as possible, as has the SHPA and other pharmacy peak bodies, to make sure that pharmacists are as well informed as they can be in order to be able to have these informed conversations with consumers about their health needs. It's important that public confidence in this important public health initiative it restored.

The PSA, in its submission to the Senate inquiry, makes a number of suggestions for ensuring the privacy and security of the My Health Record system. These suggestions make sense, and they include strict controls on third-party access to My Health Record; allowing researchers authorised by governments to access the system for data analysis and reporting, but not to access individual records, so that the system can be evaluated and future policy informed; no access to the My Health Record system by the Australian Taxation Office or by commercial interests; and excluding health and life insurance companies from access to the My Health Record system. Further, the PSA suggests that patients should not be compelled to provide information from their My Health Record to insurers. Those are all very well-thought-out and sensible recommendations that I hope are taken on board to ensure that privacy and security concerns are properly addressed in order to give the My Health Record the best chance of success for individuals and their health and wellbeing and for the wider health system.

The PSA provides these suggestions for measures which pharmacists believe may help to address some of the community privacy concerns in the My Health Record. Public advertising should highlight and clearly explain that patients can set access controls to their own My Health Record and show them where to find the instructions to do this. Public advertising should include clear information on access to a My Health Record for young people aged 14 to 17. The PSA suggests that consumer and health professional advertising should include clear information around the protections in the My Health Record system, including that it's a criminal offence for anyone other than a registered clinical professional to access a patient's record. It's a criminal offence for a registered clinical professional to open a record unless this is done in the context of care provision. And, if a person deliberately accesses an individual My Health Record without authorisation, criminal penalties may apply.

I am pleased that the Senate has agreed to Labor's proposal for an inquiry into My Health Record as a whole. This will deal with broader issues beyond the scope of this bill, such as the government's decision to shift to an opt-out system from an opt-in system, its communication of this fundamental change, and default settings within the record. I hope that the outcomes of this inquiry will assist in improving public understanding of and participation in My Health Record. This will give My Health Record the best chance of the success it was designed to achieve for individuals, health practitioners, carers, the healthcare system and the government.

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