Social determinants of health

Equity and inequity in Australia's health system are major themes in this latest issue of the MJA. From the beginning, when research is funded, through to how clinical guidelines are developed, how research is conducted, and, finally, in health outcomes, the articles in this issue explore gender and racial inequities from several angles, including what progress has been made, and where deficiencies remain. Together they highlight how diversity and inclusivity in generating and applying medical evidence is fundamental to ensuring our health system achieves equitable and high quality outcomes for all patients. In her Perspective Towards gender equity in Australian health and medical research funding, the NHMRC CEO, Professor Anne Kelso, describes an important new initiative by the leading Australian health research funder to reduce gender disparities in one key area: the Leadership levels of the Investigator Grant scheme. This measure, informed by evidence and consultation across the Australian health research sector, is welcome, and is hopefully a start towards reducing the attrition of women at early and mid‐career stages. I was especially heartened to see that its “goals are defined, its effectiveness will be monitored annually, and it will cease if it is found to be ineffective or to have achieved its goals” (doi: 10.5694/mja2.51767). Continuing the theme of gender inequity, Anna Shalit and colleagues found that women were underrepresented in Australian clinical guideline development groups over the 10‐year period, 2010–2020, especially when it comes to women in leadership as panel chairs. The authors recommend that organisations which “develop or endorse guidelines should adopt effective policies for gender balance on their guideline panels and regularly monitor progress toward this target” (doi: 10.5694/mja2.51831). For their Research article on Ethical conduct in research with Aboriginal and Torres Strait Islander peoples and communities, Luke Burchill and colleagues surveyed people working in Indigenous health research in Australia about their use of the 2018 NHMRC guidelines, and the degree of Indigenous governance and participation in their research. Their findings are essential reading for anyone working in Indigenous health. Although the NHMRC guidelines are widely used, along with local guidelines, the authors conclude that “Indigenous governance and participation was inadequate at each stage of research” and that “Indigenous health research in Australia is largely informed by non‐Indigenous world views, led by non‐Indigenous people, and undertaken in non‐Indigenous organisations” (doi: 10.5694/mja2.51757). In their linked editorial, Aboriginal and Torres Strait Islander health research leadership, Candice McKenzie and Lilon Bandler emphasise how sobering these findings are, noting that “As only 38% of [the survey] respondents had received any formal education in the history of health research involving Indigenous people, more than 60% may not have properly understood the historical background underpinning the need for and value of the [NHMRC] guidelines.” They call for more than just a commitment to strengthening capacity building among Aboriginal and Torres Strait Islander health researchers: “We support the development of a required course on the ‘legacy of health research exploiting Indigenous Peoples’ that examines the eight domains of the Consolidated criteria for strengthening the reporting of health research involving Indigenous Peoples (CONSIDER) statement” (doi: 10.5694/mja2.51827). The complex interplay of societal and health system factors that lead to inequitable health outcomes is examined by Paul Secombe and colleagues in their analysis of 12‐month mortality for Indigenous and non‐Indigenous people admitted to intensive care units in Australia. They find that “survival outcomes are poorer for Indigenous than non‐Indigenous people admitted to ICUs”, but conclude that it “is likely that the difference is less directly attributable to the ICU admission than to a complex interplay between pre‐ and post‐hospitalisation factors, socio‐economic disadvantage, remoteness, and chronic disease trajectory”. This is a message that should resonate well beyond this article across the entire Australian health system (doi: 10.5694/mja2.51763). 2023 is likely to be another challenging year for the Australian — and the global — health systems. The MJA team is committed to addressing these challenges in the research and commentary we publish, and look forward to working with authors, reviewers, and other colleagues from across the health community in the year ahead.

Virginia Barbour

Gender balance can lead to more focused recommendations and better health outcomes for everyone

Cheryl Carcel · Mark Woodward

Queensland’s approach to Indigenous health equity planning and implementation should align with existing international frameworks

Maree R Toombs · Caitlin Curtis · Claire E Brolan

Re-introducing public opioid agonist therapy clinics in Victoria could improve accessibility for some people recently released from prison

Michael Curtis · Paul Dietze · Rebecca J Winter · Kasun Rathnayake · Karen Smith · Mark Stoove

After adjusting for age and other factors, survival outcomes are poorer for Indigenous than non-Indigenous people admitted to ICUs

Paul J Secombe · Alex Brown · Michael J Bailey · Sue Huckson · Shaila Chavan · Edward Litton · David Pilcher

Police watch-house detainees have complex health needs that involve multiple agencies and require coordinated, interagency solutions

Julia L Crilly · Caitlin Brandenburg · Stuart A Kinner · Ed Heffernan · Joshua Byrnes · Cathy Lincoln · Paul Gardiner · Peter Davidson · Annabel Somerville · Daniel Wilson · David Green · Stuart Thomas

Breast cancer commonly causes significant physical and psychological sequelae; guidelines and models of care exist to ameliorate these

Christobel M Saunders · Lesley Stafford · Martha Hickey

Diversity and equity are both imperative when it comes to publishing high quality literature that promotes better health outcomes

Alisha Dorrigan · Elizabeth Zuccala · Nicholas J Talley

For too long gender-based violence has been seen as the domain of social services or justice, with policy failing to resource an integrated response by the health system

Kelsey L Hegarty · Shawana Andrews · Laura Tarzia

To the Editor: We read with interest the article by Agarwal and colleagues1 outlining the recommendations from the Health Services Research Association of Australia and New Zealand for implementing patient‐reported outcome measures (PROMs) to guide clinical care. The article regrettably fails to acknowledge that most of the commonly used PROMs — largely developed without direct patient participation — may merely provide a patient‐rated version of a measure that nevertheless reflects the clinician’s or researcher’s, not the patient’s, perspective.2,3 Importantly, “patient‐reported” conveys only that the measurement instrument — usually a scale or questionnaire — is completed by the patient. The emphasis is placed on the source of the information (ie, the patient) rather than on its content. It does not automatically imply that the information thus obtained is necessarily of value or relevance to the patient. As an attempt to shed light on this issue, our group elaborated a classification system for PROMs according to the degree of patient involvement in their development:2 patient‐generated PROMs — a type of PROM developed entirely from the patient perspective, as at all stages of PROM development the researchers are themselves patients; patient‐centred PROMs — a kind of PROM that explicitly incorporates, to a greater or lesser extent, patient priorities, given that patients themselves codeveloped the PROM jointly with other stakeholders (eg, clinicians); patient‐valued PROMs — a variety of PROM developed without patient input but valued by most patients because it reflects, at least in part, their priorities; and patient‐irrelevant PROMs — a type of PROM developed entirely without patient participation, whose contents are evaluated as not relevant by patients themselves. Fortunately, the epistemic injustice of disregarding the patient’s perspective in PROMs development is being progressively abandoned, and there seems to be a growing consensus that patients should be significantly involved — through truly participatory methods — in developing any new PROM.2,4,5 Without genuinely incorporating the patient’s perspective in PROMs development, PROMs collection will not contribute to a true and meaningful involvement of patients in their health care.

Joan Trujols · Santiago Duran‐Sindreu · Maria J Portella

The convergence of excessive heat, poor housing, energy insecurity and chronic disease has reached critical levels

Simon Quilty · Norman Frank Jupurrurla · Ross S Bailie · Russell L Gruen

The current lack of a national strategy for Indigenous adolescent health in Australia is a glaring gap

Seth Westhead · Quinton Appleby · Brittney Andrews · Tina Brodie · Alex Brown · Karla Canuto · Josh Cooke · Mahlia Garay · Thomas Harrington · Djai Hunter · Corey Kennedy · Jaeda Lenoy · Olivia Lester · Hannah McCleary · Odette Pearson · Lorraine Randall · Rachel Reilly · Hamish Rose · Daniel Rosendale · Jakirah Telfer · Peter Azzopardi

Dynamic consent has the potential to facilitate personalised medicine delivering on its goals

Liza Goncharov · Hanna Suominen · Matthew Cook

To the Editor: We thank Polkinghorne and Kerr1 for their editorial on the health care needs of people with chronic kidney disease (CKD). We write to highlight the burden of visual loss suffered by people with CKD and its effects on quality of life and mortality. The prevalence of eye diseases associated with visual impairment (combined World Health Organization definitions of blindness and low vision) in people with CKD is about 36%, rising to about 60% in people with end‐stage renal disease.2 The commonest causes of visual impairment are diabetic retinopathy (prevalence in patients with CKD, 19–46%), cataract (prevalence, 33–75%) and age‐related macular degeneration (prevalence, 8–36%).2 Increased incidence of retinal vein occlusions and hypertensive retinopathy are also associated with CKD. Patients receiving haemodialysis have increased risk of additional ocular complications. A recent study of 121 patients found at least one ocular finding in over 89% cases, including conjunctival (32%) and corneal (32%) calcification, and optic atrophy (19%).3 Ectopic calcification has been a common cause of irritated eyes in patients receiving dialysis, but this may be decreasing with modern dialysis methods. Increased risk of optic atrophy may be related to chronic anaemia and an increased risk of non‐arteritic anterior ischaemic optic neuropathy. Uraemic optic neuropathy is now an uncommon event. People with CKD are recognised to have an increased risk of dying from heart disease (up to 20 times that of age and gender matched people for people on haemodialysis).4,5 Vision impairment may incrementally contribute to increased mortality; a recent meta‐analysis demonstrated an all‐cause mortality hazard ratio of 1.43 (95% CI, 1.22–1.68) for visual acuity worse than 6/18.6 Vision‐related quality of life is potentially reduced in people with CKD, affecting their ability to complete activities of daily living and their social, emotional and economic wellbeing. Vision loss is associated with increased risk of falls and increased mental health burden, typically anxiety and depression, and may limit the ability to live independently, including self‐medicating with insulin and performing home dialysis. Multiple studies show people rate losing vision as worse than losing hearing, memory, speech or a limb.7 We agree that supportive care clinics for people electing to not receive kidney replacement therapy are important, and suggest that these clinics include regular eye care services.

Heather G Mack · Deborah J Colville · Judith A Savige

To the Editor: Recently published studies have highlighted concerns that pulse oximeter devices may underestimate hypoxia (overestimate oxygen saturation) in patients with dark skin. This occurs at levels where key decisions are made around supplemental oxygen and hospital admission (arterial oxygen saturation [SaO2] 88–94%). Amid the coronavirus disease 2019 (COVID‐19) pandemic, this important public health issue prompted the Therapeutic Goods Administration (TGA) to publish a medical device safety update.1 Long‐standing concerns about reduced pulse oximeter accuracy in people with dark skin2,3 have evolved into characterisation of significant racial discrepancies. A recent article compared 48097 pairs of measurements by pulse oximetry and arterial blood gas (ABG) in adults receiving oxygen across 179 hospitals in the United States. Among patients saturating >92% on pulse oximetry, hypoxaemia (ABG saturation<88%) was nearly three times more common in black patients than in white patients. Graphs illustrate the median oxygen saturation bias for black patients was 3% in the 89–96% range.4 A recent retrospective cohort study analysed registry SaO2 data in 372 individuals (73.1% with COVID‐19) about to undergo extracorporeal membrane oxygenation for respiratory failure. In patients with pulse oximeter readings of 92–96%, ABG oxygen saturation was <88% in 21.5% of black patients and in 10.2% of white patients.5 In these retrospective audits, patient ethnicity was based on hospital record identification, not skin colour. The oximetry devices used were not specified. COVID‐19 guidelines may incorporate pulse oximeter readings into decisions regarding hospital transfer of home‐care patients. Clinicians and services should arguably have lower thresholds for hospital review and admission of patients with dark skin (including Indigenous Australians and those of African and South Asian descent) with borderline oxygen saturations, while balancing risks of increased ABG and invasive treatment rates. Device manufacturers should develop pulse oximeters that perform accurately across more diverse populations. Further research must identify mechanisms of racial discrepancies in oxygen saturation and address them through device design. Calibration and testing processes for existing devices should be strengthened. The pre‐market approval processes of the US Food and Drug Administration currently require that only 15% of a study population have darker skin, while Australia has no specified requirement. The TGA does not regulate pulse oximeters sold directly to consumers (in stores or online) for general wellness or sporting purposes only. There are significant constraints on the scope for regulatory interventions for medical device pulse oximeters: this essential equipment cannot be excluded from the market or its supply compromised; mandating changes to instructions for use may have limited impact; differentiating between devices is hampered by evidence limitations and any consequent actions would be legally fraught; and mandating accuracy studies would be difficult to enforce. Contemporary evidence demonstrates that dark skin is a risk factor for hypoxia being undetected by pulse oximetry. Clinicians should adjust treatments and guidelines accordingly and consider audits of devices used in their institutions. Failure to address this problem at a design and testing level compromises racial equity in health care outcomes.

Jeffrey J Brownscombe · Heather Loane · Bridget Honan

To the Editor: The rapid uptake of telehealth has been a cornerstone of the response to the coronavirus disease 2019 (COVID‐19) pandemic, and has ensured the provision of essential health care despite restrictions and lockdowns. Although not new technology, telehealth has dramatically increased in prominence and received broad acceptance by doctors and patients alike. Given its success, the Australian Government has confirmed the permanent retention of multiple telehealth item numbers within the Medicare Benefits Schedule (MBS).1 However, it is concerning that this announcement also contained the fine print that the long‐standing MBS incentive for providing telepsychiatry consultations to rural and remote patients will be abolished. This is despite patients in rural and remote communities experiencing well established difficulties accessing health care and having poorer outcomes than their metropolitan counterparts.2 Telehealth consultations have occurred in psychiatry since well before the COVID‐19 pandemic, and have filled an important gap in the workforce by increasing services available in rural and remote areas.3 Video‐based consultations are particularly suited to psychiatry as the key skills of history taking, mental state examination, and psychotherapy do not require physical proximity. Delivering diagnostic assessment and psychological treatment via telehealth have long been demonstrated to be effective and tolerable.4,5 The MBS item number 288 was introduced in 2011 as an adjunct billing code that attracted a 50% loading for psychiatric consultations conducted via telehealth for patients located in a rural or remote setting, aged care facility, or Aboriginal health service. This loading incentivised bulk‐billing of these telehealth assessments. The deletion of this item number from 1 January 2022 will likely result in two adverse consequences: i) fewer telepsychiatry consultations to rural and remote locations will be bulk billed, and ii) telepsychiatry appointments that previously were only available for rural and remote patients will increasingly be offered to metropolitan patients. This will ensure fewer and less affordable options. The cessation of the rural loading for telehealth assessments is a retrograde step that is likely to further entrench long‐standing inequities in both access to care and patient outcomes for psychiatric patients who do not live in the cities. The 288 item number should be reinstated or replaced with an alternative funding mechanism to ensure bulk billed consultations continue to be available for rural and remote patients.

Michael J Weightman

As the number of requests for raw genomic data increases, policies and protocols reflecting the perspectives of clinicians, patients, researchers and research participants are required

Jane L Nielsen · Carolyn Johnston · Tracey O'Brien · Vanessa J Tyrrell

Clinicians should be mindful of the importance of post-abortion contraception counselling for preventing further unintended pregnancies

Andrew F Pesce · Gayathri Jayasinghe

Australia needs better data on health inequities to support building back fairer from the pandemic

Joanne Flavel · Martin McKee · Toby Freeman · Connie Musolino · Helen Eyk · Fisaha H Tesfay · Fran Baum

Supporting people with COVID-19 should look beyond medical management and take into account their social and economic situation

Joanne Flavel · Fran Baum

There is a lack of data relating to all-cause concussion in Aboriginal and Torres Strait Islander peoples

Jonathan Bullen · Trish Hill‐Wall · Elizabeth Thomas · Richard Norman · Gill Cowen

More than ever, we must remain vigilant about ensuring equitable access to new diagnostic tools and therapeutic options

Zhi Han Yeoh · Andrew W Roberts

To the Editor: People without Medicare coverage cannot access Pharmaceutical Benefits Scheme (PBS)‐subsidised human immunodeficiency virus (HIV) pre‐exposure prophylaxis (PrEP) or associated clinical care. Rates of HIV infection diagnosis are disproportionately higher among overseas‐born gay and bisexual men compared with Australian‐born gay and bisexual men.1 In response, in June 2020, the Alfred Hospital and the Victorian Infectious Diseases Reference Laboratory established the free PrEPMe Clinic for Medicare‐ineligible people. Data were collected using proformas after patients provided verbal consent (Alfred Health Ethics Committee approval No. 656/18). The first 100 consecutive patients were all born overseas (Box). Melbourne’s only public sexual health clinic referred 65 patients. Almost all patients were male, all patients had sex with men and reported a median of three sexual partners in 3 months at baseline; 76 patients inconsistently used condoms for anal sex. Fifty‐eight patients reported previous sexually transmissible infections (STIs); STIs were diagnosed in 12/100 patients at baseline, a rate similar to that found in Medicare‐eligible PrEP users.2 Thirty‐four patients had previously accessed HIV post‐exposure prophylaxis (PEP), and 49 patients had previously unsuccessfully attempted to obtain PrEP. The reported barriers to access mainly included costs of medical appointments and pathology, and difficulties navigating Australia’s health care system. All patients received a non‐PBS PrEP prescription. At 3‐month follow‐up, 87 patients had commenced PrEP. Local pharmacies supplied PrEP at cost price (A$40–55 per month) or free to patients with financial hardship; other patients purchased PrEP online (US$20–30 per month) or obtained free PrEP online using assistance coupons (www.pan.org.au; Box). Most patients who ordered PrEP online experienced delivery delays of 4–6 weeks, leaving them at risk of HIV infection. We report that Medicare‐ineligible gay and bisexual men and transgender women were at high risk of HIV infection, yet faced significant financial barriers to accessing PrEP. PrEP uptake has been associated with significant population‐level declines in incident HIV infection in Australia.3 Australia’s Eighth National HIV Strategy aims for virtual elimination of HIV transmissions by 2022,4 and to achieve this goal, Australia must provide universally subsidised PrEP medication and clinical services, irrespective of Medicare status.5 Medicare‐ineligible gay and bisexual men often already attend publicly funded sexual health clinics for free HIV/STI testing and treatment, as reported here. In a high income country like Australia, the additional cost of providing universally subsidised PrEP care would likely be lower than treating preventable new HIV infections, with an estimated lifetime cost of more than US$350 000 per HIV infection diagnosis.6 Box – Demographic characteristics, immunodeficiency virus (HIV) acquisition risk, and prior efforts to obtain pre‐exposure prophylaxis (PrEP) in the first 100 consecutive patients to attend the PrEPMe HIV prevention clinic at the Alfred Hospital in Melbourne, Australia* Values Total number of patients 100 Demographic characteristics Region of birth Asia 47 Latin America 31 Europe 14 Other 8 Age, years, median (IQR) 28 (26–31) Gender Cisgender male 96 Transgender female 4 Visa status Student visa 62 Working visa 34 Other 4 Referral sources Melbourne Sexual Health Centre 65 Word of mouth 16 Other† 13 Unknown 6 HIV risk at initial clinical assessment Sexual partners (3 months), median (IQR) 3 (1–5) Condom use for anal sex (3 months) Always 24 Mostly or sometimes 60 Never 13 Not applicable 1 Unknown 2 Previous STIs (ever) Yes 58 No 42 Previous STIs (ever, specific STIs) Gonorrhoea 35 Chlamydia 21 Syphilis 21 Other‡ 5 STIs diagnosed at baseline Chlamydia only 6 Other§ 6 Previous attempts at HIV risk reduction Previous use of PEP Yes 34 No 57 Unknown 9 Previous unsuccessful attempts to obtain PrEP Yes 49 No 46 Unknown 5 PrEP commencement by 3‐month follow‐up Commenced PrEP 87 Local pharmacy 65 Online 19 Online order did not arrive, then purchased at pharmacy 3 PrEP not commenced 6 Online order did not arrive 3 Other¶ 3 Lost to follow‐up 7 COVID‐19 = coronavirus disease 2019; IQR = interquartile range; PEP = post‐exposure prophylaxis; STIs = sexually transmissible infections. * Enrolment dates: 1 June 2020 to 26 October 2020. † Includes general practices, internet search, “PrEP Access Now” Facebook page, Alfred Hospital PEP program. ‡ Includes herpes simplex virus, Mycoplasma genitalium, hepatitis B virus. § Includes syphilis, hepatitis B virus, both chlamydia and gonorrhoea. ¶ Includes lost prescription, no sex due to COVID‐19.

Vincent J Cornelisse · Jude Armishaw · Mike Catton · Dean Murphy · Edwina J Wright

Recent legal changes are negatively affecting provision of timely medical care to Australian transgender youth

Fiona Kelly · Simona Giordano · Michelle M Telfer · Ken C Pang