Topics

Health communication

Health communication Scoping review 2 February 2026 Open Access

The Extent and Nature of Lived Experience Engagement in the Development of Australian Clinical Practice Guidelines, 2014–2025: A Scoping Review

ObjectivesTo examine the extent and nature of lived experience engagement in Australian clinical practice guideline development.Study DesignScoping review of Australian clinical practice guidelines published 1 January 2014–20 March 2025 that reported using a systematic search method and standardised methods for appraising evidence quality and certainty.Data SourcesPubMed, Guidelines International Network library, Google Scholar, the websites of all 25 Australian medical colleges, the Cancer Council, the Heart Foundation, the Stroke Foundation, the National Blood Authority and Caring for Australians and New Zealanders with Kidney Impairment.Data SynthesisOne hundred and fifty guidelines met the inclusion criteria; 108 (72%) reported some degree of lived experience engagement in their development, of which 98 (91%) described engagement through all development stages and 95 (88%) reported their inclusion as guideline panel members. Other methods of engagement included participation in lived experience panels and advisory groups (10 guidelines, 9%) and online surveys (5 guidelines, 5%). Ninety-seven of 108 guidelines (90%) with lived experience engagement reported that people with lived experience were asked to decide, advise or vote on recommendations or guideline content. One person with lived experience participated in the development process for 61 guidelines (56%), two people for 14 guidelines (13%), 3–10 people for 19 guidelines (18%) and more than 10 people for 10 guidelines (9%). Little information was reported about the characteristics of participating people with lived experience. Sixty guidelines (56%) reported remunerating people with lived experience for their participation, 49 guidelines (45%) reported that they received practical support and 41 guidelines (38%) reported that group dynamics were managed to support lived experience engagement.ConclusionsIt is encouraging that most Australian guidelines published during 2014–2025 reported at least some lived experience engagement in their development. However, extensive lived experience engagement was not reported for the vast majority of guidelines. The engagement of people with lived experience in guideline development needs to be improved to ensure that their values, views and preferences are reflected.

Naomi MacPherson, Thomas Benning, Bernard Tso, Chuyue Wang, Antonia Arfaras, Brian A. Beh, Vanessa Cullen, Jessica D'Lima, Tony Finneran, David C. Fry, Michelle King, Alexander Meredith, Adrian O'Malley, Joanne Muller, Tari Turner, Samantha P. Chakraborty

10 5694 mja2 70132
Health communication Editor’s choice 1 September 2025 Free

Updates on chronic liver disease

This issue of the MJA brings a focus on chronic liver disease, which was the ninth leading cause of fatal burden in Australia in 2023 and which is largely preventable.1 Metabolic dysfunction‐associated fatty liver disease (MAFLD) is the most common chronic liver condition in Australia;2 however, to date there has been a lack of clear and current guidance on its detection and management. So why does MAFLD matter? If left unchecked, MAFLD will be an increasingly important public health issue. Although patients with MAFLD are most likely to die from cardiovascular disease or extrahepatic cancers, MAFLD can progress to advanced stages of liver disease, including cirrhosis and liver cancer.3 Additionally, MAFLD is a condition that often goes undetected, and is frequently asymptomatic, especially in the early stages, with many patients only diagnosed when undergoing tests for other reasons, or following up abnormal liver function tests.4 Aimed towards individuals working in primary care, Adams and colleagues present a consensus statement summary of evidence‐based recommendations covering key clinical areas such as screening and diagnosis of MAFLD, assessment of extrahepatic comorbid conditions and underlying liver disease, and monitoring over time. Importantly, MAFLD should be considered in people with obesity and/or type 2 diabetes, or two or more metabolic risk factors.5 As such, general practitioners are in a unique position to implement these guidelines, and assess and monitor patient's liver and metabolic health over time. Hepatitis C virus (HCV) infection, another important cause of liver disease, is fortunately one in which significant progress has been made towards elimination, with the overall hepatitis C notification rate declining by 36% from 2014 to 2023.6 This decline can partly be attributed to the availability of direct‐acting antivirals (DAAs), as well as primary prevention strategies. DAAs are oral medications that are highly effective and widely accessible in primary care — a model that helps to reduce waiting times and improve access to treatment. However, in some cases, people with HCV infection are referred to tertiary centres for management by non‐general practitioner specialists, but little is known about the clinical outcomes of DAA treatment in this context. To bridge this knowledge gap, Layton and colleagues described the cascade of care for a subset of 50 patients identified in the Coordinated Hepatitis response to Enhance the Cascade of Care by optimising existing Surveillance systems (CHECCS) cohort who had been referred to specialist care for HCV in Victoria.7 They found that most patients were offered appointments and attended, and that the majority of patients with HCV infections commenced treatment and achieved sustained viral response. However, patients with a recent history of injecting drugs were less likely to commence treatment in this setting, perhaps due to perceived stigma by hospital staff and other potential personal barriers to treatment, such as having to manage multiple health and social priorities.8 The authors conclude that while treatment outcomes for those referred to specialist care were good, this may not be ideal for some groups of patients who may be more successfully treated through other models of care. Progress is being made towards eliminating chronic liver disease, particularly through advancements in treatment of hepatitis C as we work towards the national target of hepatitis C elimination as a public health threat by 2030. However, strategies to sustain uptake of treatment are essential and may require evaluating which models of care work better than others.9 Assessment and management of MAFLD provides a new challenge and is one that is ideally suited to primary care. It too will require a sustained effort, but with a holistic approach to patient care and the ability to engage patients, general practitioners are ideally placed to implement the new guidelines, support patients with managing modifiable risk factors, as well as refer for specialist care when required.

Alison Williams

From the MJA Editor’s choice 4 August 2025 Free

Important updates for clinical practice and health policy

This issue of the MJA features several articles that provide new guidelines and insights into the management and consequences of important clinical conditions. Updated guidelines on the management of gestational diabetes are now published.1 The 2025 consensus recommendations from the Australasian Diabetes in Pregnancy Society (ADIPS) update the guidance for the screening, diagnosis and classification of hyperglycaemia in pregnancy based on available evidence and stakeholder consultation.2 These consensus recommendations, from Sweeting and colleagues, are important; the last time these guidelines were updated was in 2014.1 These updated recommendations raise the diagnostic glucose thresholds for gestational diabetes mellitus and clarify approaches to early pregnancy screening for women with risk factors for hyperglycaemia in pregnancy. An HbA1C measurement is now recommended with first trimester antenatal blood tests to assist practitioners with risk stratification. There is also guidance on considerations that need to be made for early oral glucose tolerance testing in high risk women. As rates of gestational diabetes continue to rise, diagnosis and management of this condition are likely to be within the scope of practice for most generalist medical practitioners, especially in regional and remote areas with poor access to specialist teams. These recommendations are a welcome update for medical practitioners. Diabetes features in an article by Zhang and colleagues, which examined information from Diabetic Foot Services and linked it to Queensland Hospital Admitted Patient Data to assess the incidence, risk factors and length of stay for hospitalisations, with and without amputations, of people with diabetes‐related foot ulcers (DFU).3 This is again an increasingly common condition in the population as rates of diabetes and its related complications increase. The incidence of DFU‐related hospitalisations among people with DFU was high, although most did not involve amputations. The risk of DFU‐related hospitalisation was higher for people with deep ulcers or severe peripheral artery disease. The authors argue that these findings could assist services determine which people with DFU would benefit most from intensive interventions, potentially averting large numbers of diabetes‐related hospitalisations. In another clinically focused article in this issue, Seeley and colleagues analysed data from the Australian postural orthostatic tachycardia syndrome (POTS) Patient Registry to assess the symptom burden, quality of life, and diagnosis history of people with POTS in South Australia.4 This is the first Australian study based on data from a registry of people with physician‐confirmed POTS. The key findings were long delays between symptom onset and diagnosis despite seeing several physicians, reduced social engagement, high unemployment, and low quality of life for the relatively young people with POTS. The mean diagnostic delay in this study was longer than reported overseas, suggesting unique barriers in Australian health care. This will become more relevant in the future as infection with SARS‐CoV‐2 was the most common reported trigger for development of the condition. An article with important advice for physicians who support patients with genetic diseases is a summary of the recently updated guidance from the Office of the Australian Information Commissioner (OAIC) clarifying clinicians’ discretion to assist patients with notifying their relatives about genetic risk without breaching federal privacy laws.5,6 Tiller and Otlowski examine the clinician's role in this scenario.5 The authors discussed the challenge from the point of view of the patient, of their relatives and the clinician's role in managing expectations both from an ethical perspective but within an acceptable medico‐legal framework while practising in Australia. The authors conclude that “Now that the OAIC has clarified that relatives’ contact details can be collected from patients and used to notify them about their genetic risk, without breaching the Privacy Act, the development of a clinical guideline to assist clinicians would be timely. Consideration and guidance from privacy regulators in each state and territory about the interpretation of local laws would assist with this”. The MJA continues to be at the forefront of publishing guidelines and research that directly affect health policy and clinical practice.

Aajuli Shukla

Subscribe to MJA email alerts

No spam, you can unsubscribe anytime you want.

By providing your information, you agree to our Terms of Use and our Privacy Policy.

Thanks for Subscribing! Tell us more

Your email updates will use your name.

Good one! Your updates are coming

Thank you for subscribing to the MJA email alerts. Receive the latest content in your inbox.