Review of the My Health Records legislation

The purpose and objectives of the My Health Record
• PSA is disappointed that the paper has entertained the agendas of some health professionals in stating that there is still confusion over the purpose and objectives of MHR.
• In a broken health system where pharmacists struggle daily to obtain vital health information about patients (e.g. discharge information, allergies, other medicines or a health summary), the objectives of the My Health Record (MHR) have not changed in its eight years of operation – to be a repository of health information.
• Every year, 250,000 Australians are hospitalised from medication misadventure; information asymmetry in the health system is an enormous contributor to medicine safety issues.
• What is not captured in the report is why successive governments have not sufficiently incentivised, with consumer permission, the use of the system.
• PSA recommends that the MHR legislation be changed to make it mandatory for a health practitioner, where practical and the system permits, to upload information into the MHR when a patient requests it.
• It is inconceivable that the Government does not require by law that taxpayer-funded pathology and diagnostic imaging reports, MBS-funded consultations, and public hospital discharge summaries be up loaded into MHR – this basic decision would change the landscape and use of MHR.

Linking My Health Record to other digital health initiatives

• There is no apparent discussion on health informatics in the document, and in ensuring that Australia has a relevant standard.

A standardised health informatics system for Australia would ensure that the recording and access of health information about a person, and its context, can be accurately communicated. It would also allow for some cost mitigation (for example, if a PBS medicine has a restricted benefit, the use of health informatics could assist in preventing PBS subsidy being applied to a medicine if the person does not have the specified condition).

From a clinical perspective, it can assist a pharmacist give specific and focused counselling for a medicine if the pharmacist is able to determine the specific indication of a medicine via data-rich e-prescriptions or MHRs. For instance, a proton pump inhibitor used for gastro-oesophageal reflux disease would require counselling about lifestyle modification, while the same medicine used for hiatus hernia would have a different focus.

PSA acknowledges this issue may not be within the immediate scope of this review, however, it relates to a degree to questions in the discussion paper, for example, 1, 2, 4 and 9. PSA suggests this be included in the future MHR roadmap.

• There is some discussion in the paper about the use of the MHR system for reminders and alerts, for example, the use of third-party apps to assist in reminding a person about health-related trigger points. PSA believes there is significant scope and benefits for this, and it could be controlled by the patient.

Some examples uses would be:
1. Medicines that are administered in a cyclical manner e.g. contraceptives, anti-resorptive infusions for osteoporosis, depo antipsychotics
2. Medicines that require monitoring, either with cyclical or one-off requirements e.g. pre-exposure prophylaxis, clozapine
3. Vaccinations with long periods between re-administration.

Where a set time frame exists for these situations (as opposed to variable timeframes as might occur with renal function testing, INR testing or cholesterol levels), routine reminder settings would be very useful. More flexible ‘opt-in’ reminders could also be useful for other types of monitoring.

Regardless of the need, the patient could receive a notification for any of these scenarios, and could also opt-in to have notifications delivered to their nominated health professionals. Where a pharmacist has been nominated to work with this type of information, it could provide valuable insights into, for example, non-compliance with prescribed medicines.

• In terms of reliance on technology, there are still reports of infrastructure issues not facilitating adequate access for health practitioners (and likely, patients). PSA receives reports from pharmacists that internet access is still an issue with utilising digital health systems, for example, prescriptions not being able to be dispensed due to internet outages in the pharmacy. Another issue is problems with real-time data upload to MHR by pharmacies, due to not having complete data about the patient (especially gender information). If there is to be broader improvements to the MHR system, PSA believes the issue of pharmacists (and other clinicians) accessing digital health infrastructure needs to be addressed.

Laying out a My Health Record roadmap

• Possible inclusion of a standardised health informatics system in the future MHR roadmap was suggested by PSA in the previous section.

• As mentioned in the previous section, there is some discussion in the paper about how third-party apps may be developed for patient use of their data, however, there is no mention of how existing clinical information systems (in all health settings including pharmacy) could integrate MHR information so that this information can be accessed natively, without needing to go to another piece of software or online.

For example, in the case of a pharmacy dispensing program, this could mean opening up a person’s MHR within the dispensing software to access information in a contextually meaningful way. This could include diagnoses for instance (which are relevant both for therapeutic indication and potential drug interactions) or dispensing history from other providers.

Ensuring the My Health Records Act supports digital health innovation

• A matter that possibly relates to perceptions about change and early adoption, not solely or specifically in relation to MHR, but potentially relevant to future digital initiatives which could in essence capture both MHR and electronic prescriptions. Sometimes initiatives are met with less-than-positive attitudes from health professionals in some sectors, because the perceived need is not there at the time or not articulated appropriately for the intended audience.

In thinking about the future, sometimes the benefit of identifying innovation before it is needed is necessary to mitigate the significant implementation problems that can occur when innovation is introduced when it is necessary.

The COVID-19 pandemic demonstrated the need for digital health very effectively – in fact, it rapidly changed the attitudes of prescribers to the benefit of electronic prescriptions. However, temporary digital image prescription arrangements needed to be put in place because e-prescriptions, although planned, were not fully operational.

PSA believes there are certainly lessons that can be learned and applied to future directions that the MHR system takes, and how to overcome resistance to changes by highlighting the disruption created when innovation is forced upon us.

• The paper makes reference to penalties associated with the MHR system. We note that there are significant penalties (financial and professional) to misuse of the MHR system, but very little ‘reward’ in contributing to it. PSA fully supports the need for penalties in response to irresponsible use or data breaches, but our observation is that this is not achieving the best ‘balance' in working towards promoting and encouraging ‘good’ use.

Is it appropriate to have a category of hidden documents? (Part of Question 7)

• Feedback from pharmacists suggests that, on balance, a category of hidden documents should not exist, if its existence is apparent or visible to anyone accessing MHRs.

Consumer control is a fundamental principle of the MHR system. While it would be ideal and preferable if a person’s MHR could be regarded as a complete record, pharmacists (and other health practitioners) generally accept that this is not the case currently for most people. A MHR does contain centralised information that may be more extensive than what a health practitioner would otherwise have access to; however, pharmacists’ experience shows that there is still a fair way to go to educate people of the benefits in aiming for their MHR to be a complete health record, and to actually populate their record with all relevant information. Thus, in this context, pharmacists question the value of flagging the existence of hidden documents.

Further, if a person wishes to have certain documents hidden, it seems counterintuitive that this action would be flagged and be visible by those from whom the documents are being hidden. This could lead to undesirable consequences such as undermining the trust and clinical relationship between the person and their healthcare professional.

Should the data breach notification scheme in the MHR Act be revised and possibly harmonised with the data breach notification scheme in the Privacy Act? (Question 12)

• PSA believes the data breach notification schemes under these two Acts could be harmonised given they have overlapping impact.

Should the category of people authorised to author and upload a shared health summary be widened, and in particular, to include a midwife who is not a registered nurse? (Question 14)

• PSA believes that pharmacists should be able to upload health summaries based on the provision of services such as a Home Medicines Review (HMR) or a MedsCheck consultation, or when a pharmacist consultation results in a significant change to treatment or understanding in how a person is managing their health. Practice guidance issued to pharmacists by PSA in the "Guidelines for comprehensive medication management reviews" already suggests that medication management review reports (the initial report and any follow-up reports) should be uploaded to the patient’s MHR (if they have one); this was based on stakeholder consultation and advice that PSA received.

Further consultation with pharmacists and GPs/Specialists who provide referrals for HMRs could be valuable as there are pros and cons to the practice of routinely uploading HMR reports to MHRs. This is because the primary purpose of a pharmacist’s HMR report to the referring medical practitioner is to provide medication-related recommendations, and these are then considered by the doctor in the context of the person’s medication management plan and to inform ongoing care. Information contained in a HMR report may not necessarily be understood by the person, although it can certainly be argued that a person should have access to any health information about themselves.

PSA suggests now is the time to take the MHR to the next stage, that is MHR version 2.0. The foundation has been laid. General practices, hospitals, community pharmacies are connected. More than 90% of patients have a MHR. The architecture has been built that now allows the MHR to meaningfully address the healthcare challenges that many have said the MHR will address. These include some 250,000 hospital admissions related to medication misadventure, these include avoidable adverse drug events, and duplicate pathology tests. But these attainable goals, and outcomes will only be achieved if the MHR system evolves. If we rely on the same legislation that has delivered us to our current destination then sadly we will fall off course. The legislation needs to be rerouted, so that we achieve our final destination.

In looking forward, until the MHR data can be interrogated using intelligent systems (such as clinical information systems) then the MHR is like a locked box or locked filing cabinet. There is information there, but unless you go looking for that information, and you know exactly where to find it, it can remain unknown to the clinician. In today's society, with the advent of smart systems, and artificial intelligence, a clinical information system on the desktop of a general practice or community pharmacy should be able to interrogate the MHR system for new information. In today's healthcare system, it should be unacceptable for a discharge summary and a medical diagnosis list from a general practice to have different information without alerting the clinician to this fact. Our systems could do this, if we enable them, through legislation. This push-and-pull use of data in the MHR system allows the clinician to be the curator of information and for decisions to be made on the best available information at the point of decision-making. The clinician cannot be the prospector, miner, geologist, all in one. It is simply not acceptable to under-utilise the information and communication technology smarts that we have at our fingertips.

With a push-pull system, we will see a reduction in medication errors, duplicate tests, and missed diagnoses as well as gaps in care. Clinicians can be presented with information as opposed to being expected to find, compute and decide on the information. The consultation document listed the MHR system as a supplementary health record. This underplays the role that the MHR can play in today's healthcare system. It is far from a supplementary record if used effectively as outlined above. It can ensure that no information is lost, forgotten, or misplaced. MHR 2.0, should be seen as a transparent digital filing cabinet, where no one has to go looking for a piece of information, because that information will be presented to them when the time is right.