Chapter 2Views on the bill
2.1Submitters were generally supportive of the main amendments to the My Health Records Act 2012 (My Health Records Act) and the Health Insurance Act 1973 (Health Insurance Act) as proposed by Schedule 1 of the bill. This chapter will discuss the key views of submitters, including:
support for the bill;
opportunities to streamline processes;
the importance of public education on the amendments;
privacy concerns;
costs associated with transitioning to the new requirements; and
concerns relating to the 7-day patient access delay policy.
2.2The chapter concludes with the committee’s view and recommendation on the bill.
Support for sharing by default
2.3The majority of submitters recognised the importance of the bill’s amendments to improving access to health information for both healthcare practitioners and recipients. For instance, the Royal Australian College of General Practitioners (RACGP), the peak body for general practitioners in Australia, submitted that overall it is supportive of the legislative changes to mandate the sharing of patient information to the My Health Record.
2.4RACGP also acknowledged that default sharing of patient information is a key part of a connected healthcare system, in line with the findings from the Strengthening Medicare Taskforce Report:
The findings from The Strengthening Medicare Taskforce Report, that access to real time health information is a key part of a connected healthcare system will be supported through the default sharing of patient information by both private and public practitioners and services.
2.5Similarly, the Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG) acknowledged that ‘the ability to centralise patient results in one digital platform has substantial benefits for healthcare providers and patients’. RANZCOG further identified that clinicians currently access multiple separate systems for pathology and radiology, ‘which can be time-consuming, especially when patients do not recall where their tests were conducted.’
2.6As such, RANZCOG commented that:
The proposed system of automatic sharing of results into My Health Record will significantly reduce these inefficiencies and improve time management for clinicians, ultimately improving patient care.
2.7Further, the Australian College of Nurse Practitioners submitted that sharing by default ‘reduces the risk of avoidable adverse outcomes, hospital admissions, and unnecessary duplicative tests’ while also promoting ‘the use of evidence-based treatments and interventions, ultimately enhancing patient care’.
2.8Relatedly, in his submission, Mr John Majkut, a private individual, expressed his support for the bill by reflecting on his own personal health experience. Mr Majkut informed the committee that he has recently had some health issues and that he has become aware of ‘how important it is to have my health information and test results available to me and future GPs on My Health Record’. Mr Majkut concluded that it is ‘so important’ to have all his information available in one place.
2.9The Department’s submission also outlined the additional benefit of minimising unnecessary and duplicate testing and imaging, leading to shorter wait times and faster diagnoses.
2.10This was echoed by the Australian Primary Health Care Nurses Association, who submitted that the bill would improve provider experiences by ‘reducing time chasing results,’ and enabling ‘immediate access to patient information in emergencies and for timely diagnosis’.
Streamlining and automation
2.11Whilst submitters were generally supportive of the bill’s proposed amendments, some submitters discussed streamlining the impact of the sharing by default provisions.
2.12The Pharmaceutical Society of Australia (PSA) told the committee that it believes that consideration should be given to ‘streamlining processes as much as possible to minimise impact on health practitioners and service providers … who will be required to implement the mandatory uploading of information and test reports’.
2.13Similarly, the Australian Rheumatology Association (ARA) acknowledged the importance of consolidating patient information within My Health Record, as it would ‘greatly enhance usability and accessibility and reduce duplication of investigations’. However, it emphasised that it is ‘equally critical that any mandatory uploading of health information is streamlined to minimise the administrative burden on busy clinicians’.
2.14The Agency has outlined that it will provide support for healthcare providers who are unable to immediately fulfil uploading requirements, and the bill provides the Agency the ability to grant providers additional time to connect and meet the requirements to share by default.
2.15The Australian Diagnostic Imaging Association (ADIA) specifically commented on proposed section 78C. This section would require, in certain circumstances, a prescribed healthcare provider organisation (that is a registered healthcare provider organisation, or an approved registered repository operator) to keep evidence that an upload exception applied for a period of two years starting on the date the healthcare is provided.
2.16As such, ADIA underlined that it is ‘critical that the process of applying exemptions is mostly automated’ so that:
… radiologists do not have to make a decision on whether to share each report to the My Health Record; and if not sharing, manually determine the reason for applying an exemption. This would add significantly to radiologist workload and introduce the risk of errors.
Public education
2.17Some submitters also underlined the importance of ensuring that patients and practitioners alike are educated about the new My Health Record arrangements arising from the bill’s amendments.
2.18RACGP emphasised its belief that GPs should not be expected to explain the changes to patients during consultations. As such, it suggested that consumer resources (like posters or flyers) should be available through practices for GPs to refer their patients to.
2.19Further, RACGP submitted that messaging should reinforce that My Health Record is consumer-controlled, where consumers manage privacy settings and can restrict access to specific healthcare organisations.
2.20The PSA suggested that consideration should be given to developing comprehensive resources for patients about the ‘share by default’ arrangements, including for high-risk and/or vulnerable patient groups. The PSA also suggested that these resources are disseminated to health practitioners for awareness and to use in their practice to inform patients.
2.21LGBTIQ+ Health Australia similarly called for the development of targeted education campaigns to empower LGBTIQ+ populations to navigate the privacy settings of My Health Record and to raise awareness of their right to request for information to not be uploaded at the point of collection. LGBTIQ+ Health Australia expressed that this should also include practical guidance that is tailored to diverse needs, such as those who are trans or gender diverse, and intersex people.
Privacy concerns
2.22The committee received evidence that discussed privacy implications for healthcare recipients, with some submitters also emphasising that practitioners should not be held liable in certain instances where patient privacy is breached. These matters are discussed below.
Privacy for individuals
2.23Consumers Health Forum of Australia submitted that it is ‘generally satisfied’ that the limitations to an individual’s right to privacy are ‘commensurate to ensure a better uptake and use of My Health Record’.
2.24However, a submitter raised concerns regarding the possibility of health practitioners making an error when uploading information to My Health Record:
… what happens when an error occurs whereby, for example, someone goes into ‘auto’ mode and misses that vital piece of information? What could be perceived as a minor oversight on one person’s part can mean huge ramifications for another.
2.25The Department and the Agency advised that the My Health Record has ‘comprehensive controls’ that ‘comply with all relevant government privacy, security and cyber security standards’. They further noted that misuse of information on the My Health Record system is prohibited and subject ‘to heavy penalties under the My Health Records Act and the Privacy Act 1988 (Cth)’, and that this would not change as a result of the bill.
Implications for healthcare providers
2.26Discussing broader privacy concerns, Australian Pathology, the peak body for private pathology providers, raised privacy risks associated with centralised databases, contending that these databases are a ‘target for cyber criminals’.
2.27Noting similar concerns, RANZCOG commented that due to the proposed penalties for non-compliance with sharing by default, it is ‘crucial’ that legal protections are in place for healthcare providers who do upload results, particularly in the event of cybersecurity breaches. RANZCOG consequently submitted that in these cases, healthcare providers should not be held liable for uploading information to My Health Record.
2.28Similarly, Australian Pathology recommended to indemnify providers against breaches of patient privacy that result from uploading patient information in order to comply with the legislation.
Costs
2.29Some submitters also discussed the costs associated with transitioning to the new requirements under the bill. The Australian Rheumatology Association drew the committee’s attention to the cost of updating practice software that does not integrate with My Health Record, identifying it as a ‘universal concern’.
2.30ADIA also submitted that the cost of compliance ‘may be substantial, particularly for smaller providers with fewer resources’. ADIA noted that these smaller providers could experience ‘financial and operational strain’ due to costs associated with system upgrades.
2.31Similarly, the National Aboriginal Community Controlled Health Organisation (NACCHO) raised that the bill may have differential impacts on Aboriginal Community Controlled Health Organisations (ACCHOs), noting that training staff in data sharing protocols will require time and funding. NACCHO also advised that the bill could potentially ‘add to the administrative burden being experienced by ACCHOs’ and urged that ‘consideration must be made on the FTE funding required to undertake the additional administrative load’.
2.32The Department and the Agency noted that sharing by default is expected to have negligible cost implications for the seven largest pathology and 130 biggest diagnostic imaging providers, which combined account for 98 per cent of Medicare Benefits Schedule pathology and diagnostic imaging claims respectively.
2.33The Department and the Agency also advised that providers can request an extension to obtain appropriate technical capabilities:
Although costs are expected to be incurred by some pathology and diagnostic imaging providers to implement conformant software, a formal extension process established under the Bill will provide for additional time, where needed, to obtain appropriate technical capabilities to adhere to requirements.
2.34Further, the Australasian Institute of Digital Health (AIDH) recognised that the bill will ‘likely deliver savings and efficiencies’, and cited a research paper from the Productivity Commission that found better integration of digital technology into healthcare could save more than $5 billion a year and ease pressures on Australia’s healthcare system.
Other issues
2.35Several submitters commented on matters outside of the bill’s provisions, specifically in relation to the 7-day patient access delay policy. This is discussed below.
7-day patient access delay policy
2.36Evidence to the committee discussed the ‘7-day patient access delay policy’ (7-day access policy), with submitters having mixed views on whether the policy should remain in place. According to the Department and the Agency, when the My Health Record system was established, a policy decision was made to withhold patient pathology and diagnostic imaging reports for seven days after they had been uploaded to provide clinicians with adequate time to review the report and discuss with the patient.
2.37As noted by the Department in its supplementary submission, the policy is not mentioned in the bill and will not change as a result of its passage.
2.38The PSA submitted that it understood that there have been recent cases where the real-time release of pathology test results and diagnostic information has resulted in positive outcomes. As such, it commented that it ‘strongly believes’ the 7-day access policy should ‘be reviewed promptly following the establishment of the default-sharing framework’.
2.39Similarly, COTA Australia (COTA), the peak body representing older people, noted that the bill does not affect the 7-day access policy. However, COTA also observed that the policy is being reviewed by the Agency’s Clinical Reference Group.
2.40COTA submitted that ‘as a principle we believe timely and immediate access by an individual to the results of their health information should be the default’. As such, it expressed its hope that the 7-day access policy is removed, but that an optional health provider-initiated delay remains in place.
2.41However, RACGP and the Royal College of Pathologists of Australasia (RCPA) highlighted their concerns about the possibility of removing the 7-day access policy. RACGP identified risks associated with making results immediately available to patients, noting that it could ‘lead to unintended and negative outcomes where patients do not understand or misinterpret their results’.
2.42RACGP also acknowledged that the Agency’s Clinical Reference Group is working to provide strategic advice and clinical oversight, including recommendations for certain test results to be excluded from immediate access.
2.43In line with the RACGP’s comments, the RCPA submitted that, in its view, the removal of the 7-day access policy must be implemented thoughtfully:
The RCPA supports the principle of empowering consumers with faster access to their health data. However, the removal of the seven-day delay for diagnostic imaging and pathology reports must be implemented thoughtfully, with clear exclusions for certain types of tests. Some diagnostic results are complex, sensitive, or require clinical interpretation before being shared with patients. Releasing these without adequate safeguards risks significant harm to patients.
2.44The RCPA provided specific examples of results that should be exempted from the removal of the 7-day access policy, including:
Genetic Pathology Results: Probabilistic findings that carry implications for family members and require counselling.
Anatomical Pathology (AP) and Cytopathology Reports: Diagnoses such as malignancies that require multidisciplinary review before patient communication and are best communicated with the support of a medical professional. Perinatal postmortem reports can be extremely complex, have implications for future pregnancies, and require counselling.
Haematology Reports: Malignant haematological diagnoses such as leukaemia, lymphoma and myeloma may require multidisciplinary review prior to communication to the patient.
Clinical Chemistry Reports: Tumour marker studies may indicate malignant disease and are best communicated by the requesting medical practitioner to the patient within the clinical context.
Critical Infectious Disease Results: Diagnoses like HIV or Hepatitis C that demand immediate clinical guidance for management and psychological support.
2.45The RCPA similarly welcomed the establishment of the Agency’s Clinical Reference Group and urged them not to rush the process of developing a list of exclusions.
2.46Relatedly, NACCHO listed ‘scenarios of concern’ that could arise if the 7-day access policy is removed:
the patient gaining an impression that things are worse than they are, noting that results are rarely binary
potential associated mental health impacts for the patient and/or carers, if, for example, they are at risk, or alone, and without clinical supports/reassurance
patients incorrectly interpret results due to the way they are presented/reported.
2.47As such, NACCHO noted its in principle support for the immediate release of results to patients with provision for the ordering clinician to request delayed release. NACCHO also suggested that a pop-up notification should appear with the release, ‘to remind the patient to contact their medical practitioner to discuss results’.
Committee view
2.48The committee acknowledges that the vast majority of submitters were generally supportive of the bill and deems that its passage would be a significant step in modernising Australia’s digital health infrastructure.
2.49The committee further understands that the bill upholds the consumer-controlled nature of My Health Record, where individuals can still choose whether to have a My Health Record, or choose whether certain records are to be shared.
2.50The committee also notes that the bill addresses key recommendations from the Strengthening Medicare Taskforce, which found that access to real time health information is a critical foundation for a modern and connected healthcare system.
2.51The committee is of the view that the bill would advance patient-centred care by reducing the need for duplicative tests and providing practitioners with strong evidence that can guide patient treatment and outcomes.
2.52While there was strong support for the bill, the committee acknowledges that some submitters held concerns about specific impacts of the bill’s provisions. For instance, the committee understands the importance of ensuring that busy clinicians are supported to deliver patient care efficiently and effectively. The committee is of the view that the bill’s provisions will improve efficiency and the allocation of resources across the healthcare system, by minimising duplicative or unnecessary tests and treatments.
2.53Further, the committee notes the call for the development of educational resources for practitioners to refer their patients to. The committee encourages the Department and the Agency to make such resources available on their websites so that practitioners are not unduly burdened with explaining changes to individuals.
2.54The committee also recognises the concerns of some submitters regarding the 7-day patient access delay policy for access to reports. However, as clarified by the Department and the Agency, the committee notes that the bill does not change this policy. As such, the committee believes it would be appropriate for the Department to clearly communicate to stakeholders that the bill does not impact the 7-day policy.
2.55Some inquiry participants also raised concerns for individuals and health practitioners relating to data breaches of My Health Record. The committee acknowledges the Department’s reassurances that the My Health Record system has controls in place that comply with government privacy, security and cyber security standards.
2.56Finally, the committee heard about possible costs to providers resulting from upgrading software. The committee notes that providers can apply for an extension if more time is needed to obtain technical capabilities, and also acknowledges the significant evidence that the bill will result in cost-savings for patients.
2.57The committee believes that the bill represents a significant advancement in modernising Australia’s digital healthcare that will benefit patients and health practitioners alike, and recognises that it is a first step in broader reforms to position the My Health Record system to become a central part of Australia’s healthcare system.
2.58The committee recommends that the bill be passed.
Senator Marielle Smith
Chair
Labor Senator for South Australia