WA Health has been developing guiding principles for the selection, collection, use and reporting of Patient Reported Measures (PRMs) which includes both Patient Reported Experience Measures (PREMs) and Patient Reported Outcome Measures (PROMs).We asked for your feedback on the draft guiding principles, this included whether they were clear, relevant, appropriate and if worked well together to reflect a balance approach to system-wide use of PRMs.

We received 101 responses, with good representation from our consumer and carer community as well as WA Health staff.  Overall, there was a very high level of support for the draft guiding principles with some suggestions for re-wording and queries about how these would be applied or work in practice.

As a result of the feedback, we have made some minor adjustments to these guiding principles to ensure their intent is clear. We have also developed an overarching statement describe the purpose, use and expected audience for these guiding principles. The final version of these can be viewed in the pdf below.

We will be using these to guide the next stages of this project looking at selection of PROMs for use within the WA Health System. If you would like us to let you know when future engagement opportunities arise relating to this project, please send us an email at health.policy@health.wa.gov.au.

The Office of Population Health Genomics (OPHG) asked stakeholders for their feedback on the content of the draft Genetic Health Western Australia (GHWA) Service Plan 2025-2030 (the Plan), which has been developed to guide GHWA’s delivery of clinical genomic specialty services over the next 5 years.

We asked for stakeholders’ opinions on:

• The proposed future service model for GHWA,
• The appropriateness of the service directions and underlying objectives, and
• Whether the proposed actions will collectively ensure that the objectives of each service direction are achieved.

A total of 23 responses to the survey were received through Citizen Space and 3 written submissions were received via email. The feedback received was positive overall, with some additional areas for GHWA to focus on in the future suggested by respondents. The key themes that emerged from the responses are summarised below.  

Increased accessibility for clinical genomic specialty services

• 8 respondents raised the improvement of access to genomic testing and/or GHWA’s services as a priority for the future.
• Common suggestions included expanding eligibility for genomic testing for certain consumer groups and enabling timelier access to GHWA’s services. 

Expanding collaborations with stakeholders

• 6 respondents suggested that GHWA should partner or engage with other health service providers and/or community groups to improve service accessibility and coordination of care.
• Suggested collaborators included health consumers, primary care professionals, specialty services in other hospitals, and interstate or national education and advocacy bodies.

Raising awareness of GHWA’s services

• 5 respondents highlighted the need to raise consumers’ and health professionals’ awareness of GHWA and its services.
• It was noted that this can help to increase trust in and improve consumer access to GHWA.

Staff training, recruitment, and retention

• 5 respondents emphasised the importance of GHWA’s specialised workforce being appropriately trained, recruited and retained to meet the demand for genomic services.
• Specific suggestions to achieve this included supporting genetic counsellor trainees, providing staff with opportunities to gain regional experience, and ensuring attractive working conditions.
• It was also recommended that GHWA utilise other health professionals (e.g., general practitioners, nurses) to deliver services and relieve pressure on GHWA.  

Other issues that multiple stakeholders felt were important to action in the Plan included:

• Improving equity of access and cultural safety for Aboriginal people.
• Addressing concerns around genomic data privacy and trust in the service.
• Providing ongoing psychosocial support for consumers.
• Securing sufficient resourcing to successfully implement the Plan.

In response to the feedback, the Plan has been amended as follows:

• The principles of genomic health care from the WA Genomics Strategy 2022-2032 have been included to: highlight that any new services GHWA provide must be informed by scientific evidence (of utility and cost effectiveness) and community need; ensure that GHWA continues to empower consumers to participate in decision-making around their genomic healthcare; and emphasise the need for GHWA to continue to uphold genomic data privacy and informed consent.
• Specific stakeholders for GHWA to work with when implementing actions have been removed in preference for emphasising that meaningful partnerships and collaborations with all stakeholders (including consumers and carers) will be necessary to successfully implement the Plan. This will ensure a consistent and inclusive approach to stakeholder engagement which considers the specific aims, resources available, and timeframe for each implementation project.
• Approaches to address genomic health equity for Aboriginal people have been strengthened.
• It has been clarified that GHWA’s likely future role in supporting the implementation of precision medicine approaches into the WA health system will be informed by their expertise.
• The Plan already outlines actions related to GHWA improving psychosocial support for consumers by directing consumers to relevant support groups and services and coordinating care and managing complex psychosocial support needs for certain consumer groups. However, it has been clarified that GHWA’s role in care coordination will predominantly be limited to medical care for a consumer’s genetic condition where there is no ‘home’ medical specialty. 
• Recognised enablers (previously introduced in the ‘Future considerations’ section) such as sustainable investment, meaningful partnerships and collaboration, and accountability, roles, and responsibility have been listed in the Executive Summary to highlight their importance for successfully implementing the Service Plan.

Respondents’ specific suggestions for how to implement actions (e.g., raising awareness of the service, collaborating with stakeholders, and improving staff retention) were noted by the OPHG and GHWA for consideration when implementing the Plan.

The final Genetic Health WA Service Plan 2025-2030 is now available to view on GHWA’s webpage here.  

Any queries can be directed to genomics@health.wa.gov.au.  

In October/November 2023, the WA Department of Health End of Life Care (EOLC) Program conducted a consultation to gain a better understanding of the current uptake of advance care planning (ACP) and use of ACP resources in WA. The survey sought feedback on the revised WA Advance Health Directive (AHD) and suite of ACP resources that were released on 4 August 2022.

69 respondents completed the survey with 76% reporting they thought the resources were very effective/ effective. Reported levels of awareness and use of the key ACP resources (Advance Health Directive and accompanying Guide, Values and Preferences Form, Your Guide to ACP in WA: Workbook) was high. Qualitative feedback on the resources was largely positive indicating the information within the resources is clear and comprehensive with a broad range of diversity represented within the images. Areas of concern that were noted included the literacy level and length of some of the resources.

The most common ACP activity reported within the last 12 months was ACP conversations with family, carers or friends.

Health professionals reported they were moderately or very confident in supporting patients with ACP. However, there were a small number of respondents to this question so the results may not be indicative of true levels of confidence across the whole workforce.

The findings informed the development of several actions that the EOLC Team is currently implementing alongside existing work plans and priorities. This includes exploring possibilities to simplify the range of ACP information, arranging targeted awareness around common misconceptions, coordinating general awareness raising of ACP and investigating further opportunities for health professional education.

The consultation was about proposed supply controls over nitrous oxide, with the aim of reducing supply patterns associated with increased health harm.

Nitrous oxide gas is used as a prescription medicine, as a food additive and in the automotive industry. It is also inhaled as a recreational substance. Changing patterns of recreational use have resulted in increasing health harm, including damage to the nervous system, behavioural changes and reduced ability to safely drive.

The consultation related to nitrous oxide when classified as a Schedule 6 poison. There will be no changes to the regulation of nitrous oxide as a prescription medicine.

The survey was set up so those supplying nitrous oxide, those using nitrous oxide in food and drink preparation and those using nitrous oxide as an inhalant were asked questions most relevant to them.

A total of 260 submissions were received in response to the online survey. The majority (85%) of responses were from individuals with the remainder from organisations and businesses.

There was variation in responses between the self-identified groups of respondents. Generally, those indicating they used nitrous oxide for home cooking or recreational use and those who identified as a member of the public, were less supportive of any restrictions. Health professionals, organisations representing health professionals and government departments were most supportive of the introduction of additional regulatory controls over supply.

Businesses selling nitrous oxide were of the opinion that additional supply controls would have an economic impact on their businesses.

Advice was also sought from an industry reference group, with representatives from the hospitality, wholesaling and retailing sectors. An expert working group convened by the Mental Health Commission also provided input.

Details of the final proposals are available in the Consultation Report February 2024.

The proposed new rules for purchasing nitrous oxide in Schedule 6 will mean:

• Businesses using nitrous oxide bulbs for food additive purposes will have ongoing access to these products. These businesses will need to provide their supplier with evidence of their food business registration or liquor licence.
• Other businesses or institutions will be able to seek approval from the Department of Health to purchase nitrous oxide bulbs.
• Individual members of the public will no longer be able to purchase nitrous oxide bulbs.
• Supply of food additive grade nitrous oxide in larger cylinders or cannisters will not be allowed.
• Anyone (aged 16 years or older) will be able to purchase nitrous oxide intended for automotive use, provided the product has added sulfur dioxide, to deter inhalation.

The consultation was about amendments to the Medicines and Poisons Regulations 2016 and the Schedule 8 Medicines Prescribing Code. A primary aim of the consultation was to seek feedback on proposals to reduce regulatory burden, particularly for prescribers.

The proposed changes follow implementation of ScriptCheckWA, Western Australia’s real-time prescription monitoring system. ScriptCheckWA provides clinicians with up-to-date information about all monitored medicines prescribed and dispensed for their patient within WA.

The survey was set up so respondents could choose to answer only those questions most relevant to them.

A total of 39 submissions were received in response to the discussion paper. Eighteen were from organisations and 21 were from individuals.

Peak bodies representing prescribers, pharmacists and consumers responded. A significant number of respondents confined their feedback to either the section about regulation of stimulant medicines or the section about regulation of medicinal cannabis.

Most respondents supported a requirement for prescribers and pharmacists to register to access ScriptCheckWA. Opinion was divided about whether use of ScriptcheckWA, at the time of prescribing or dispensing, should be mandated.

There was general support for regulating the prescribing of stimulant medicines and medicinal cannabis in a similar manner to other Schedule 8 medicines. Detailed prescribing restrictions would be included in a ‘prescribing code’ rather than in the Regulations.

Over half the respondents supported the list of Schedule 4 medicine proposed to be classified as ‘monitored medicines’. Another 26% of respondents supported most of the medicines on the list being monitored through ScriptCheckWA.

Following agreement by the Minister for Health, regulatory changes are being progressed. Details of the final proposals are available in the Consultation Report (April 2023). 

Further targeted consultation will be undertaken during development of a new prescribing code to replace the current Schedule 8 Medicines Prescribing Code.