Health services administration

Bring on the debate, but let’s base it on evidence Not long ago, I received an email describing two different health care experiences: Two patients limp into two different medical clinics with the same complaint. Both have trouble walking and appear to require hip replacement. The first patient is examined within the hour, x-rayed the same day, and has a time booked for surgery the following week. The second sees his family doctor after waiting 3 weeks for an appointment, then waits 8 weeks to see a specialist, has an x-ray which isn’t reviewed for another week, and is finally scheduled for surgery a month later. Why the different treatment for the two patients? The first is a golden retriever. The second is a senior citizen. This tale of two treatments may seem to trivialise the gravity of a human experience, but it does serve to highlight the community’s prevailing unhappiness with our health service delivery: the untimeliness of access to doctors. As David Weatherall, Emeritus Regius Professor of Medicine at the University of Oxford, recently noted: . . . the work load of doctors today is such that good doctoring has become almost impossible, especially in an environment in which a medical supermarket mentality has been and continues to be generated by successive governments.1 In the face of medical workforce shortages, governments are looking to displace doctors with alternative health care providers like nurse practitioners (NPs), physician assistants (PAs), and other health professionals such as psychologists and pharmacists to relieve bottlenecks in health care delivery. Displacing doctors in this way, or “role or task substitution” as it is also termed, has been actively pursued in the United Kingdom and United States. In the UK, the number of NPs grew by 27% between 2004 and 2007 to over 47 000; NPs work in such diverse areas as general practice, emergency medicine, anaesthetics, surgery and endoscopy.2 In the US, there were about 69 500 PAs in 2007 and 140 000 NPs in 2004.3 Different strands of the US education sector are delivering courses to train these practitioners. There are university-based PA programs, and nursing schools now provide doctorates of nursing, in which candidates are purportedly trained in skills equivalent to those of primary care doctors, and practise using the title “doctor”.2,4,5 In light of these developments, an obvious question requiring clarification is: “What defines the role of these alternative practitioners?” One recent definition of NPs in an Australian context states: A nurse practitioner is a registered nurse educated to function autonomously and collaboratively in an advanced and extended clinical role. The nurse practitioner role includes assessment and management of clients using nursing knowledge and skills and may include, but is not limited to the direct referral of patients to other health-care professionals, prescribing medications and ordering diagnostic investigations. The nurse practitioner role is grounded in the nursing profession’s values, knowledge, theories and practices and provides innovative and flexible health care delivery that complements other health care providers. The scope of practice of the nurse practitioner is determined by the context in which the nurse practitioner is authorised to practise.6 The Canadian definition of an NP is almost identical.7 These definitions and the ascendency of NPs in the UK prompted the BMJ to run with a front cover (Box) questioning the difference between an NP and a doctor. PAs are starting to appear in Australia. Queensland Health is exploring the use of PAs through pilot programs in the areas of primary and emergency care at Mount Isa Hospital and at Cooktown Multipurpose Health Service, in cardiology at both Prince Charles and Princess Alexandra hospitals in Brisbane and at Specialist Connect, Brisbane for ear, nose and throat. In these pilot programs, two experienced US-trained PAs will be employed at each site to explore whether PA roles are valid in our health system in terms of productivity, quality of care, patient satisfaction, cost-effectiveness, PAs’ ability to work as part of a multidisciplinary team, and whether PAs provide a comfortable social and cultural fit within the Queensland health workforce. (Bronwyn Nardi, Senior Director of Workforce Planning and Coordination, Queensland Health, personal communication). A similar program is underway in South Australia, led by the state’s Health Department. The program is to pilot PAs in major metropolitan hospitals in Adelaide in paediatrics, anaesthetics and surgery.8 More recently, two US-trained PAs were seconded to the Department of Surgery at Queen Elizabeth Hospital in Adelaide to perform designated tasks (Guy Maddern, Jepson Professor of Surgery, University of Adelaide, Queen Elizabeth Hospital, personal communication). In addition to these initiatives, the University of Queensland (UQ) will inaugurate Masters and Diploma graduate programs in PA studies, and James Cook University will be starting an undergraduate program. All are scheduled to commence in 2009. The UQ program will provide broad generalised medical training with an emphasis on primary care, health maintenance and disease prevention, and medical, nursing and PA students will be taught together within the Faculty of Health Sciences to foster an ethos of team work (Peter Brooks, Executive Dean, Faculty of Health Sciences, UQ, personal communication). Nurses also have a defined path to follow to become NPs, including pursuit of a Masters degree, a designated period of clinical work and a final assessment by a multidisciplinary team of examiners (Ged Kearney, Federal Secretary, Australian Nursing Federation, personal communication). How should the medical profession react to these developments? Any discussions on doctor displacement will invariably raise the spectre of turf warfare.9,10 Be that as it may, there are questions that must be widely addressed and vigorously debated. It needs to be acknowledged upfront that the current medical workforce shortage is the outcome of successive past federal governments’ policies to cap the number of medical graduates. Doctor displacement is a solution to the resulting predicament, but no solution should sacrifice quality and safety. Becoming a doctor requires passage through an extremely competitive and rigorous selection process and indepth training in biomedical and clinical sciences to prepare for autonomous practice with its myriad clinical uncertainties. This is followed by a period of mandated, prevocational internship, followed by vocational training as prescribed by the clinical colleges. Doctors undergo 10–15 years of training to reach the stage of autonomous practice. Such rigorous training for doctors surely raises the question as to whether NP or PA programs will inevitably evolve into a truncated alternative route to working as a doctor, especially if their graduates were to be remunerated as independent, standalone clinicians. Importantly, will the advent of independent NPs and PAs effectively result in a two-tiered medical system in which some patients have access to lesser medical care than others? Most proponents of PAs and NPs stress the need for their obligatory involvement in teams focusing on multidisciplinary care, and this is commendable. But just how is this service delivery to be remunerated? Will remuneration be based on service provided by the team, or will individuals be remunerated for individual episodes of care? Who will decide what services can be provided by PAs and NPs and how they should be remunerated? Surely a bureaucratic and indemnity nightmare awaits! This approach will require the untangling of notions of parity — of cognitive and procedural services — and a political commitment to studies of the relative value of services provided by PAs and NPs and other members of multidisciplinary teams. Moreover, thorny problems such as these also touch on an overarching philosophical notion — that one of the primary roles of the doctor is to bring certainty to an undifferentiated illness, and to advise on and supervise an intervention or management plan.11 If this is a unique role for which medical graduates have been specifically trained, how is it to be brought to bear under the proposed new arrangements? Will doctors become mere service supervisors, or will their role continue to stress competence in diagnosis and treatment of individual patients? In any event, it is imperative that doctors are the team leaders. There is also an urgent need for consistent, reliable and agreed competency standards, as well as registered trade titles for PAs and NPs, regulated and supervised by multidisciplinary bodies and transferable between various jurisdictions. Interestingly, the evidence underpinning the effectiveness and cost-effectiveness of doctor displacement schemes and protocols is not particularly rigorous.2,3 Furthermore, there are intrinsic cultural considerations in health care delivery. Any programs of doctor displacement in Australia need to be underpinned by contemporaneous research to provide answers as to their relative efficiency and effectiveness, as well as patient safety and satisfaction. It would be unethical and unconscionable to introduce and sustain programs of doctor displacement without evidence from local research. Finally, the debate on whether we proceed with specific doctor-displacement programs will need to be cognisant of recent medical workforce developments. An impending “tsunami” of medical graduates from the recent expansion of our medical schools will soon flood our health care systems.12 Their education and role in health care delivery should not be compromised by developments in doctor displacement. The Australian Government response of using doctor displacement to alleviate workforce shortages must also take into account current acute and future projected nursing shortages.13,14 Thus, it is absolutely imperative that this entire debate be based on community requirements, rather than on the pursuit of vested interests or ideology-driven political agendas. So, bring on a wide-ranging debate about doctor displacement, but let us ensure that this is an evidence-laden debate — a debate that avoids the trenches of turf warfare. In this debate we need creative leadership from doctors.

Martin B Van Der Weyden MD, FRACP, FRCPA

In Victoria, almost one in six registered medical practitioners were over 60 years old in September 2006. Knowing when to give up practice is an important decision for most doctors and a critically difficult decision for some. Normal ageing is associated with some cognitive decline, although brighter, better educated individuals may be less at risk. Mild cognitive impairment (MCI) is associated with higher rates of Alzheimer’s dementia. Medical practitioners with early dementia or MCI often lack the insight to accept that they are no longer able to practise safely. Doctors can accommodate cognitive decline by choosing to cease procedural work, allocating more time to each patient, using memory aids, seeking advice from trusted colleagues, and seeking second opinions. Medical Boards are responsible for protecting the public from unsafe medical practice. There are no agreed guidelines to help Medical Boards decide what level of cognitive impairment in a doctor may put the public at risk.

Robert G Adler PhD, FRACP, FRANZCP · Conn Constantinou MB BS

Friendly bosses, fair working conditions and positive specialty training prospects down under It is said that there is many a true word spoken in jest, and I’m beginning to understand why. In the United Kingdom, it is joked that once a doctor has worked in Australia, there is no turning back. The reasons may seem obvious — the famous relaxed Australian attitudes, escaping the stresses of the National Health Service (NHS), a temperate climate . . . but those are only the tip of the iceberg. I am now 10 months into my Australian adventure, and it is time to take stock of the differences between the two systems of medicine. Why is practising down under so attractive to us Poms? Back in August 2007, I was concluding my first year as a newly qualified doctor at a highly esteemed teaching hospital in Leeds in Yorkshire. Twelve months earlier, as a less sleep-deprived medical student, I had spent 2 months in Sydney on my medical elective at a central teaching hospital. The experience left a lasting impression, and as I stared blearily out of the window into the Yorkshire drizzle, I realised I was fated to return. Australia was to be my foreign sabbatical — a new medical experience separating my “foundation training” (intern and resident years). So here I am with my “year” rapidly running out, only to have applied for and successfully secured a further resident year at the same Sydney hospital. This will be accredited in the UK as the completion of my foundation training, which leaves me with a difficult decision. By January 2009, should I stay or should I go? The bread and butter of my resident job in Australia doesn’t differ much from what it would be in the UK. However, the terms and conditions are considerably different; paid overtime — an alien concept in the NHS that I find encourages better care and fosters goodwill within the workforce. This brings me to the effective use of time. I cannot begin to calculate how many hours in the UK are dedicated to the art (or is it skill?) of sexing up ultrasound requests or begging for computed tomography scans from radiologists who are desperately busy and whose services are overstretched. The system in Australia is more organised, with more staff and better access to resources. This cuts out the telephone histrionics and means that, in some hospitals, imaging can be performed and reported on the same day. Hierarchy comes into the equation as well. Consultants in the UK still resemble those in “Doctor in the House”, dressed in dark suits and followed by a quaking entourage of house officer, senior house officer and registrar. In Australia, the style is less formal but no less effective. I am on first-name terms with my boss, and am encouraged to seek advice, day or night. This is a refreshing change from the strict, intimidating chain of command back home. I cannot neglect to mention the impact on the morale of British junior doctors of the newly devised Modernising Medical Careers (MMC) scheme, and the fallout it has generated. MMC was heralded as the educationally sound way of training junior doctors and enabling them to secure training posts that would lead to consultancies. Major flaws in the Medical Training Application Service (MTAS — the area of MMC dedicated to the national appointment of junior doctors to specialised training) were uncovered last year. Criticism has focused on the system’s online technical problems, the marking and weighting of applications and the lack of training posts. Fear of unemployment is high, with government figures citing 32 000 applicants for 23 000 posts.1 The British media have been uncharacteristically sympathetic to the plight of doctors applying to the MTAS, playing on the public fear of hospitals devoid of doctors who have all emigrated to Australia as a result of a “shambolic” recruitment process. “Remedy”, an opposition group set up by doctors, reflected this fear by renaming MTAS “Moving To Australia Soon”. By May 2007, the MTAS was unceremoniously shelved after protests from the medical community, which provoked an independent inquiry. These are still unsettling times for junior doctors. It appears Australia prides itself on an open and systematic process for appointing junior doctors to training programs.2 However, there is a growing shortage of training positions as the numbers of Australian and foreign graduates increase. A similar situation may be faced in this country if the medical community does not learn from the UK’s mistakes. Australia must be wary of the blurring of political and professional agendas when it comes to allowing the government to instrumentalise the process by which junior doctors are trained. In February 2008, the British Home Office ended its tradition of allowing doctors from Australia and other Commonwealth countries to benefit from training in the NHS.3 This medical “iron curtain” has been drawn in response to the bottleneck of home-grown and foreign graduates competing for limited positions. I hope Australia won’t make the decision to follow Britain into the realms of curtailing training opportunities for foreign graduates. It breeds disillusionment and cuts short invaluable experience gained only by immersing oneself in a different medical system. Who knows what the future holds for me? At the moment I am more than happy working in Australia, with friendly bosses, fair working conditions and positive specialty training prospects.

Sarah C Armstrong MB ChB

Objective: To characterise the nature and impact of World Youth Day (WYD) 2008 on emergency department (ED) presentations at key hospitals.Design, setting and participants: Retrospective analysis of WYD pilgrims presenting to the EDs of St Vincent’s Hospital and Sydney Hospital, 9–23 July 2008.Main outcome measures: Frequency of pilgrim ED presentations; presenting complaint, Australasian Triage Scale category, diagnosis, admission to hospital and demographic characteristics.Results: 191 pilgrims presented at the two EDs during the study period, comprising 7.8% of all visits to these EDs. Pilgrims had a median age of 22 years, and most were international visitors. The female-to-male ratio was 1.7 : 1. The most common diagnoses were lower limb strain or sprain, infections, and acute asthma. Pilgrims presented with less severe illnesses (with lower triage scores), and were less likely to be admitted to hospital than other patients.Conclusions: The pilgrim caseload was small, and these presentations were less acute and less likely to result in admission than non-pilgrim presentations. Thus, the overall impact on the hospitals was very small.

Myles W H Smith · Gordian W O Fulde MB BS, FRACS, FACEM · Patricia M Hendry

The association between smoking and lung cancer is now an accepted fact. Every day, doctors base management decisions on cardiovascular risk calculated using the Framingham equation. It is because of such findings and practical implications that the British doctors study and the Framingham Heart Study from the United States are among the world’s best known longitudinal studies. The stories of these landmark studies in the fields of epidemiology and public health have already been told;1,2 but longitudinal researchers have also been at work in Australia, with implications for our particular population and the wider world. We selected just a few of these (Box 1) — studies that have already demonstrated some longevity and which we judged would be of particular interest to our readership — and interviewed some of their key investigators. What are their stories? How will they make their mark in medicine? The Australian Diabetes, Obesity and Lifestyle Study (AusDiab)Interviewee: Professor Paul Zimmet“How many Australians suffer from diabetes? How many new cases are diagnosed annually? ... How many people have complications of diabetes that are threatening to their vision or even to their life? ... These are not questions from ‘Trivial Pursuit’ nor is the answer to each of these questions readily available”, wrote Professor Paul Zimmet in the Medical Journal of Australia in 1985.3 At that time, Zimmet was frustrated that there had been little research into the growing problem of diabetes in Australia. Even Papua New Guinea, then one of the poorest countries in the world, had better diabetes data. Zimmet’s involvement in the epidemiology of diabetes had begun a decade earlier when, in 1975, he had gained funding from the US National Institutes of Health (NIH) to conduct a diabetes prevalence survey on Nauru, a Central Pacific island. The President of Nauru, Hammer DeRoburt, had invited Pincus Taft — his Australian physician and a colleague of Zimmet’s — to the island because he thought diabetes was a problem on Nauru; he was right! Zimmet and Taft’s survey found the highest prevalence of diabetes in the world — about a third of the adult population were affected.4 With further NIH funding, Zimmet and his team were able to survey other Pacific countries and Mauritius, and also, in 1985, to set up the International Diabetes Institute (IDI) in Melbourne as a World Health Organization collaborating centre for the epidemiology of diabetes. “It was really that NIH funding which allowed me to create the institute and establish the framework and the infrastructure that was then able to do AusDiab”, said Zimmet. In 1996, Australia’s health ministers agreed that diabetes would become one of the national health priorities. Spearheaded by Dr Michael Wooldridge, the then federal Minister for Health and Aged Care, the National Diabetes Strategy was launched in 1998. Arising from (but only partly funded by) the Strategy, the Australian Diabetes, Obesity and Lifestyle Study (AusDiab) was commissioned, with Zimmet and Professor Timothy Welborn as the lead investigators. AusDiab was a population-based, cross-sectional survey of the national prevalence of diabetes and associated risk factors in people aged 25 years or older. The study involved an initial household interview, followed by a biomedical examination that included an oral glucose tolerance test, and questionnaires. It was conducted between May 1999 and December 2000 in 42 randomly selected districts in the six states and the Northern Territory of Australia. “It was akin to an army exercise”, said Zimmet. Team members would go in advance to work out logistics of transport, motels and meals, as well as to identify suitable study centres, which might be schools, town halls or local bowling clubs. Blood sugar-level tests were done immediately on site at a mini-lab, and blood samples were then sent by car or plane to the main lab for other testing and storage. In the initial cohort, 11 247 people attended the biomedical examination. The most alarming finding was that almost a million Australian adults had diabetes — equating to 7.4% of the adult population and a 300% increase since 1981.5 A further 16.3% had pre-diabetes, and there was a 60% prevalence of overweight and obesity and a high prevalence of untreated hypertension. Further funding, now with Professor Jonathan Shaw from Melbourne as co-investigator, allowed a 5-year follow-up study of 6537 participants in 2004–2005. This determined, among other things, that about 100 000 adults in Australia develop diabetes each year; that is, about 275 people every day. AusDiab is the largest national study of diabetes in the world. To ease ongoing funding concerns and to provide critical infrastructure, the IDI has recently merged with the Baker Heart Research Institute in Melbourne. There is no longer any argument that diabetes is a global epidemic with devastating human and socioeconomic effects. However, Zimmet says other questions related to diabetes now need answers, such as “Will preventing type 2 diabetes prevent cardiovascular disease?” Bettering the Evaluation And Care of Health (BEACH)Interviewees: Associate Professor Helena Britt, Associate Professor Graeme MillerEach year in Australia, more than 100 million general practice services are provided to about 85% of the population — to the tune of about $4 billion in Medicare payments.6 What really happens in these consultations? What is being diagnosed? In whom? And how is it being treated? Although Medicare statistics can provide some information about general practice services, it is data from the Bettering the Evaluation And Care of Health (BEACH) program that have been able to inform health care policy and clinical practice by answering these questions. Now in its 11th year, the BEACH program is a continuous national study of general practice activity in Australia — the only such study in the world — conducted by the Australian General Practice Statistics and Classifications Centre, a collaborating unit of the University of Sydney and the Australian Institute of Health and Welfare. Since its inception in 1998, 100 000 encounters between general practitioners and patients from a random, changing sample of 1000 GPs have been added to the BEACH database each year. The database now includes details of more than a million encounters. The BEACH program has provided independent data about a range of often controversial topics, including consultation length, payment structures, doctors’ prescribing practices, and adverse drug events, to various stakeholders, including researchers, educators, government departments and agencies, pharmaceutical companies and health care professional organisations. The program has produced 23 books (freely available for download from the BEACH website) and about 100 articles published in recognised journals. Most recently, the group has reported on the prevalence and patterns of chronic disease in Australia, finding that one in four Australians suffer from two or more chronic conditions.7 When asked to comment on the program’s impressive productivity, Associate Professor Helena Britt was quick to point out that: “What makes the productivity level so high is a fantastic team of excellent health services researchers”. There were also many years of methodological development and validation before BEACH was launched. “We didn’t land on the BEACH without preparation. It did take 20 years to get to that point ... and some more from [Emeritus Professor] Charles Bridges-Webb before that.” Between 1978 and 1990, Britt, a research psychologist by training, worked in the University of Sydney’s teaching and research general practice. The practice, run by Bridges-Webb, used a continually evolving data collection system that was based on his work in the 1960s and 70s with patient-based data collection from all general practices in the Victorian town of Traralgon. In 1990, the team successfully secured funding from the National Health and Medical Research Council (NHMRC) and the General Practice Evaluation Program for the first national study of general practice for more than two decades, and for a comparative study of rural and metropolitan general practice. These studies were reported in supplements to the MJA. Thanks to their distinctive covers, they became known as the purple report (Morbidity and treatment in general practice in Australia 1990–1991) and the green report (A comparison of country and metropolitan general practice).8,9 Some very lean years followed these two studies, with the team only managing to stay together by taking on smaller jobs from different groups, such as doing quality research for clinical trials for pharmaceutical companies, and, from 1993, by offering (for a fee) the method they’d developed as a quality assurance option to about 4000 GPs, thus gaining further evidence for and experience in using their method. Then, in 1997, with growing interest in how new drugs were being used in clinical practice, the team managed to “stitch together” sufficient funds from government and other sources, including the pharmaceutical industry, to launch the BEACH program the following year. Since the launch of BEACH, funding has remained mixed and uncertain, being renegotiated with all involved parties on an annual or biennial basis. In 2004, the government contribution to funding was withdrawn and, in 2006, there was a real concern that the program would be forced to close. However, this fear was not realised, as the government’s contribution to the program was re-established in mid 2007.6 Why does the BEACH team keep persisting in its efforts despite the ongoing funding challenges? According to the Centre’s Medical Director, Associate Professor Graeme Miller: “It’s a commitment to the importance of general practice, and of reliably describing general practice to justify what it’s doing and its place in the health care system”. The Blue Mountains Eye Study (BMES)Interviewee: Professor Paul MitchellDoes smoking cause blindness? What effect does visual impairment have on daily living? Observing the impact of eye disease on individual patients might explain why a clinical ophthalmologist would develop an interest in epidemiological research. The notion becomes even less surprising when one learns that Australian legend Professor Fred Hollows is one of two mentors whom ophthalmologist Professor Paul Mitchell credits with inspiring him to develop the Blue Mountains Eye Study (BMES) — the first large Australian population-based study of eye disease. Mitchell says that it was Hollows who talked him into doing an MD in Newcastle, New South Wales, in the 1980s, to research the prevalence of and risk factors for diabetic retinopathy. His other mentor is US-based Professor Ron Klein, who began (and still runs) the Wisconsin Epidemiologic Study of Diabetic Retinopathy in 1979 and the Beaver Dam Eye Study in 1987. When the two met at a diabetes conference in Australia, Klein invited Mitchell to the US to see how the Beaver Dam Eye Study had been done. It was after being appointed to the University of Sydney’s Department of Ophthalmology in 1990 that Mitchell designed the initial BMES to study visual impairment and common eye diseases in a representative older Australian community sample, and obtained NHMRC funding. Study participants were identified in two postcode areas in the Blue Mountains region, west of Sydney. The area was ideal because of the residents’ demographic similarity to the overall Australian population (for most characteristics); and its geographical separation from Sydney meant that publicity could be well targeted. In the first wave of the study (BMES-1), 3654 residents aged 49–97 years were examined during 1992–1994, with Mitchell personally conducting the eye examination for all participants. There have since been 5-year and 10-year follow-up studies, and an extension study in 1999–2000 of further residents who became eligible to participate (BMES-E). A 15-year follow-up study is currently underway. Since 2001, the BMES has been incorporated into the research activities of the Westmead Millennium Institute’s Centre for Vision Research in Sydney. When asked about the study’s highlights, Mitchell nominates the finding that visual impairment has an impact on quality of life that is similar to that from most major systemic conditions, and doubles the need for earlier institutionalised care; it is also associated with about an 80% risk of increased mortality. Further, the BMES was among the first studies in the world to demonstrate the link between smoking and blindness (now a warning on cigarette packets sold in Australia and elsewhere) (Box 2).10 Among the most important of more than 300 papers published from the study, Mitchell includes a New England Journal of Medicine report of the link between using inhaled steroids and developing cataracts.11 According to Mitchell, one of the core strengths of the BMES is the collection of objective data. All eye photographs are graded using standard protocols developed for the Beaver Dam Eye Study, which allows for the independent assessment and pooling of data from the BMES with data from other national and international cohorts. A further strength is that, right from the start, the BMES was designed to be much bigger than “just an eye study”. A wide array of data was collected and then expanded upon in the follow-up studies, including fasting blood tests, various detailed questionnaires, and hearing assessments, with the project also extending into genetic studies. Ever looking forward, Mitchell believes that a valuable area for future investigation is a possible link between basic vascular signs in the eye and systemic events, particularly cardiovascular events, stroke and mortality. “The eye is the only place you can see vessels — microvascular vessels — naked”, said Mitchell. “These microvascular signs are quite important for a whole range of diseases, and can now be imaged very easily without dilating the pupil and assessed automatically with computer programs.” The Busselton Health StudyInterviewees: Dr Digby Cullen, Associate Professor Alan James, Professor Bill MuskWho should benefit from a community-based study? Most obviously, “the general population”, but Busselton-based GP Dr Kevin Cullen, who founded the Busselton Health Study in 1966, nominated the community itself. One of the study’s five original aims specified that the study should “provide a community service in the detection, treatment and prevention of disease and in the education of a population”. For more than 40 years, and persisting beyond Dr Cullen’s death in 1994, the study’s dedication to the people of Busselton, a picturesque coastal town in the south-west of Western Australia (Box 3), has been returned in kind. This has not only been in terms of study participation, but also in enthusiastic ongoing support, fund-raising and volunteering. As an example — at one time, the local milkman was delivering bottles of glucose solution for the recipients to drink before blood testing for diabetes on the same day.12 The Busselton Health Study is now one of the longest running epidemiological research programs in the world. The predominantly Anglo-Saxon adult community of Busselton Shire took part in cross-sectional health surveys every 3 years from 1966 to 1981, with surveys of all schoolchildren each following year. A “hiatus” for a few years was followed by several surveys of special groups; and, in 1992, a specific family-based genetic study was conducted. In 1994–1995, 5500 surviving participants from the early surveys were successfully recalled. In 2005–2007, an NHMRC project grant enabled a further study of a randomised sex- and age-stratified sample of adults and of all schoolchildren, followed by studies of chronic airflow obstruction and sleep apnoea, with ongoing studies of diabetes and healthy ageing in “baby boomers”. So far, a total of around 16 000 people have been studied at least once. The earliest descriptive reports in Australia of the prevalence of common diseases including asthma and other lung problems (the study has always had an emphasis on respiratory disease), diabetes and coronary heart disease are those from the “population laboratory” of Busselton. Numerous papers have been published: interviewees Professor Bill Musk, Associate Professor Alan James and Dr Digby Cullen (son of Kevin) nominated research describing the decline in lung function related to asthma and cigarette smoking,13 and genetic studies into asthma14,15 and haemochromatosis16 as their recent favourites. From the community perspective, there has always been a policy of providing feedback to survey participants, with recommendations made to seek medical advice from the family doctor if indicated. Dr Digby Cullen said, “We have made an attempt to create a therapeutic community in Busselton and to a significant extent I think we have been successful ... certainly, when you look at the health statistics of Busselton, there is good evidence for a creation of a therapeutic community with, for instance, very low rates of smoking in the population — about 12% in our most recent survey”. In addition, the prevalence of coronary artery disease has been shown to be lower in Busselton than in the nearby state capital, Perth. What of the future? Since 1966, Busselton has grown sixfold from a small town with a population of about 5000 to one of around 30 000, as people, particularly retirees, have moved into the area. However, the population has remained relatively stable, ethnically and socioeconomically speaking, and wine growing, tourism and farming remain the main industries. The Busselton genetic resource is in international demand. Associate Professor James said, “We’re now matching the phenotypes that we have collected in Busselton with genotyping in our own studies and with an expanding number of international collaborators; there’s plenty of scope for genetic epidemiology to go from strength to strength in Busselton”. Regardless of how the study develops, the community focus will persist. Professor Musk said, “We very much feel the community around us and behind us. All of us worked with Kevin Cullen briefly or for various times before he died. He instilled in me, and I’m sure in plenty of other people, that our first duty was to the community. We plan to keep that, as a mantra, if you like, into the future”. The Dubbo StudyInterviewee: Professor Leon SimonsWho among us will live to a ripe old age, physically well and mentally able? In the 1980s, when Associate Professor Leon Simons of St Vincent’s Hospital, Sydney, decided to conduct a longitudinal study, he was aware that older age groups had been relatively neglected in research studies up to that time. He also realised that by studying “survivors”, some characteristics of healthy “long-livers” might be identified. The decision to embark on the Dubbo Study of the Health of the Elderly — now known more simply as the Dubbo Study — was preceded by a raft of other decisions. Initially a neurophysiologist, then a lipid clinician–researcher, Simons followed the 1980s evolution in his field by retraining as an epidemiologist while on sabbatical in Jerusalem. Simons’ Israeli mentor, Professor Yechiel Friedlander, remains a collaborator to this day. A key decision was where to locate the study. Simons said, “We selected Dubbo [a major regional centre in NSW, home of the renowned Western Plains Zoo] in reverse, after working out the size of the town we needed — a community of 35 000 to 40 000 people”. Another decision was what data to collect. At the time, there was much data available in the form of aggregated health statistics — how many people each year go to hospital, how many go home, how many die — but not much was known about the people themselves. “We decided to study what is loosely called ‘healthy ageing’ but with a focus on cardiovascular disease risk factors, because they were a little bit more controversial — did what we knew in middle-aged people also apply to senior citizens?” said Simons. “And when you study the elderly, you open up a Pandora’s box of sociology.” Thus, the Dubbo Study came into being as a prospective, longitudinal community study of the health of all non-institutionalised residents of the Dubbo local government area who were born before 1 January 1930. The cohort, first examined in 1988, was composed of 2805 residents (1233 men and 1572 women) aged 60 years or older. Initial study aims included identifying patterns and predictors of mortality, hospitalisation and the need for residential care. As well as extensive biomedical investigation, including a resting electrocardiograph, peak expiratory flow measurement, and blood testing for lipid and glucose levels, there was also to be a social science investigation of healthy ageing and health service use. Cardiovascular diseases and dementia were conditions of special interest. Subsequent data collections were made in 2000 and 2002–2003 as part of the Study of Assets and Health Dynamics Among the Oldest Old (AHEAD) investigation; and there has been continuing “cold pursuit” of death, hospitalisation and residential care data. Pragmatically, Simons’ favourite reports are those most recently published17 or currently in preparation. Our favourite may be the 2005 article which reported that having a “green thumb” (daily gardening) can guard against dementia.18 Less than half of those in the original cohort are still living, making further active data collection unlikely. Nevertheless, more papers are on the way to add to the 50 already published. Today, as the shape of Australia’s population pyramid changes to reflect our ageing population, there is heightened interest in healthy ageing and the provision of health care and other services to our older citizens. Over the next 10 to 15 years, as the most resilient of the cohort retire to their gardens, Simons anticipates that the Dubbo Study’s database will continue to be accessed and continue to contribute to our knowledge of ageing. Tasmanian Longitudinal Health Study (TAHS)Interviewees: Associate Professor Shyamali Dharmage, Professor John Hopper, Professor E Haydn WaltersHow do childhood factors affect adult-onset asthma? How do issues around the time of puberty influence the risk of breast cancer? When a disease “runs in the family”, is it because of environmental or genetic reasons? Today, the Tasmanian Longitudinal Health Study (TAHS) is attempting to answer these questions and more. However, very different questions were at the forefront when the study began in the late 1960s. The study, originally known as the Tasmanian Asthma Survey, was the brainchild of Dr Heather Gibson, a pioneering doctor working with the school medical service in Tasmania. Professor Haydn Walters, one of the current TAHS team, said: “At that time, the main interest was in how much asthma and how much other respiratory morbidity there was in young children, and what the risk factors were”. The baseline study in 1968 surveyed all 8500 schoolchildren in Tasmania who were born in 1961 and were then 7 years old. Particularly novel for the time were the lung function tests performed on all of these schoolchildren, known as probands. The probands’ brothers, sisters and parents were also surveyed, taking the total number of participants at the time of original survey to 45 900. Follow-up studies were conducted in 1974, 1979, 1992 and 1996, often involving a specific subset of the original participants. The first time that blood samples were collected from participants in the TAHS was in 1996, from a relatively small sample of families. The aim of the current and next phases of the study is to investigate the total original cohort of 45 900. Ninety per cent of the probands have now been traced, with 80% of them participating in a recently completed follow-up study. The sibling follow-up is underway, with 70% traced so far, and 60% of them participating in the study. The TAHS researchers are seeking to collect blood samples from all probands and siblings for genetic testing, to tease out the different effects of “nature” versus “nurture”. Today, the original probands are around 47 years of age, and include such prominent figures as a Deputy Lord Mayor and leading medical researchers. The TAHS researchers say their most cited article to date is one published in the BMJ in 1994. It reported that only one in four probands who had asthma in childhood continued to have asthma at age 32, and that one in 10 probands who didn’t have asthma as a child developed it later on.19 Among more recent interesting findings, the TAHS found that, for girls, being overweight at 7 years of age triples the risk of developing adult-onset asthma.20 The TAHS is unique internationally because it is the world’s largest and longest running respiratory health study. However, because of the population-complete nature of the cohort, the length of follow-up and the opportunities for a general health study, research is now extending to other areas such as breast cancer, eye disease and social science. As TAHS team members say, on the one hand, “It’s now a very rich dataset in terms of early life exposure ... and the original questionnaires asked about symptoms rather than diagnosis — a real strength from a research point of view”. On the other hand, “In terms of a cohort, the group are now starting to get very interesting because they’re getting older. They’ve gone through the healthy part of their life and now the major diseases are starting to emerge”. In keeping with the study’s original respiratory focus, the TAHS will enable the study of lung ageing. Although the TAHS was originally (and, essentially, still is) a Tasmanian study, 30% of the original probands now live outside Tasmania — mostly on the eastern Australian mainland in Victoria, NSW and Queensland — and, as current TAHS team leader Associate Professor Shyamali Dharmage explained, the study now involves a national collaborative family of researchers. But the TAHS has always been a family study. As Professor John Hopper, a long-standing TAHS team member, said, “The thing that differentiates this from a lot of other longitudinal studies is that it involves families, and its strength is that Australian families tend to know where each other are. The next stage will be to study the offspring”. Wittenoom cohort studiesInterviewees: Professor Nick de Klerk, Associate Professor Lenore Layman, Professor Michael Hobbs, Professor Bill MuskWhat would you do if you could see an accident waiting to happen that would hasten the deaths of hundreds of people? In 1948, Dr (later, Professor) Eric Saint, who had emigrated from the United Kingdom to Australia, was horrified by dust levels in the crocidolite (blue asbestos) mine and mill at Wittenoom in the Pilbara region of Western Australia, more than 1000 km north of Perth (Box 4). Saint wrote to the head of the WA Health Department advising that the mine would produce the greatest crop of asbestosis the world had ever seen. Unfortunately, responsibility for any decision to halt mining in the area rested with the Department of Mines, and the Health Department could only stand on the sidelines in frustration. Tragically, in time it became clear that there was another even more lethal health risk to the workers and residents of Wittenoom. The first Wittenoom-related case of mesothelioma was diagnosed in 1960,21 shortly after the initial suggestion of a link between exposure to crocidolite and mesothelioma.22 However, the Wittenoom mine continued to operate until 1966 when, ironically, it was closed for economic rather than health reasons. The mine may have been losing money then; today, the loss in life continues. In the mid 1970s, when it became apparent that an epidemic of asbestos-related disease was emerging in Wittenoom workers, Australian researchers began a cohort study. Mine workers’ employment records, giving detailed information about the identity of the workers, their length of employment and the duties they performed, were made available to the research team. Although only several hundred people were employed at any time, about 7000 workers (mostly men) had passed through the mine or mill over the years. Most worked for only a few months; many were post-war migrants, several hundred of whom returned (and were traced) to Italy. Resulting studies have reported that asbestos-related diseases, particularly malignant mesothelioma, lung cancer and pneumoconiosis, continue to be the main causes of excess mortality in the former blue asbestos miners and millers of Wittenoom. Further, mesothelioma appeared much earlier in these people than had been seen after exposure to other types of asbestos in UK industrial studies. By the early 1980s, people who had lived in the town of Wittenoom without working in the mine or mill were also developing asbestos-related disease at an alarming rate. In the 1950s and 60s, crocidolite tailings had been spread around the town as a cheap gravel and sand substitute. Professor Bill Musk said, “They brought the crocidolite in from the gorges and laid it around the township to counter the dust or the mud, depending on whether it was raining or not. So everybody living in town was exposed”. Professor Michael Hobbs continued, “The school playground had been layered with asbestos tailings as a better surface for children to be running about on, rather than hard dirt”. Thus, a residents cohort study involving more than 4500 former residents of Wittenoom, including Indigenous residents, was embarked upon. Intervention and other studies have continued in that group to this day, giving, as Associate Professor Lenore Layman said, “some support and comfort to people who live with this terrible fear about their children getting mesothelioma”. Together, the Wittenoom studies have provided evidence that (unlike with smoking) the risks of mesothelioma do not diminish with increasing time since exposure. Most importantly, Professor Nick de Klerk says that dose–response curves were able to determine, once and for all, that, “When it comes to blue asbestos, there is no such thing as a ‘safe’ level of exposure”. The evidence from these studies has influenced asbestos policy in Australia, assisted in legal deliberations, inspired a hit song by Australian rock band Midnight Oil (“Blue sky mine”), and even led to Wittenoom becoming a designated contaminated site that has been literally wiped off the map. However, asbestos is still being used in developing countries around the world. Hobbs said: “The first world has sort of recognised the dangers of asbestos and stopped using it. I think we have a moral obligation to go on pushing this barrow to make sure that our colleagues in China and India are equally armed with the information they need to try and stop things happening there. Because, if not, whereas we’ve seen hundreds of cases of mesothelioma, they will see thousands”. Women’s Health Australia (WHA)Interviewees: Professor Julie Byles, Professor Annette Dobson“I am woman, hear me roar; in numbers too big to ignore ...” proclaimed the lyrics of Australian-born Helen Reddy’s song “I am woman”. The song won Reddy a Grammy Award in 1973 and is now famous as the anthem of the Women’s Movement. But how much did we really know then about ordinary women’s lives and the influences on their health? In 1985, after much lobbying, Prime Minister Bob Hawke’s government committed to forming a National Women’s Health Policy. The Policy, which would provide a framework and planned strategy to improve the health of women in Australia, was to incorporate a wide perspective — recognising that women’s health was much more than just reproductive and sexual health. In the early 1990s, a tender was put out by the federal government for a national longitudinal study on women’s health — one that could collect scientifically valid information relevant to the development of health policy and practice, and that would enable women to gain greater power over shaping the nature of health care. On seeing the advertisement for the tender, a group of researchers from different academic disciplines (including medicine, sociology, psychology and statistics) met over coffee in Newcastle, NSW, and decided to put in a submission. Thus began Women’s Health Australia (WHA), also known as the Australian Longitudinal Study on Women’s Health. The study’s overall goal was (and still is) to clarify relationships between women’s health and a range of biological, psychological, social and lifestyle factors. Professor Annette Dobson said: “We’ve never claimed to have just one clear hypothesis. Rather, what we felt was needed was enough power in the study to be able to address new questions as they emerged. We did have some concrete examples of the sorts of hypotheses that could be answered, but we didn’t say this was a study to address this or that question. We were saying it’s a study to look generally at factors that influence the health of women”. Extensive surveys have been mailed at regular intervals to a national sample of thousands of women in three different age cohorts (18–23, 45–50 and 70–75 years at baseline in 1996). These age groups were chosen because they represented times before which major changes could be expected in women’s lives; so, for example, there would be baseline data for young women before most of them had babies. Further, the women were recruited from the national Medicare database, allowing a link to health services data. More than 41 000 women (14 792 young women, 14 200 middle-aged women and 12 624 older women) responded to the baseline surveys in 1996;23 and now, about 10 000 completed questionnaires are received each year. Over time, themes explored have included health-related behaviour (eg, diet and exercise), time use (eg, paid and unpaid work, and leisure), life stages and key events (eg, childbirth, divorce and widowhood), violence against women, and chronic disease. Because WHA does not focus on a specific exposure, disease outcome or social problem, publications are highly diverse (http://www.alswh.org.au/public.html). Dobson said, “We’re contributing to the story of the health of Australian women”. There is sustained work on overweight, obesity and physical activity, and in the unfashionable area of incontinence. Professor Julie Byles said, “We’re dispelling the myth that incontinence is just a condition for older people”. WHA is also one of the significant studies of ageing in Australia. In addition, there are add-on studies and collaborations. WHA has passed the 10-year mark and is currently funded to last the desired 20 years. However, the researchers see possibilities for expansion and extension. Byles said, “We have found that the cohorts’ experiences are likely to be different as they age, so we have put a suggestion to the Department [of Health and Ageing] that we recruit a new young cohort — precisely because of those differences”. The WHA study has certainly fulfilled Reddy’s command that women not be ignored. And, to make sure of it, Byles would like the study to “hang around” at least until the older women reach the milestone age of 100. Australians advancingThese eight longitudinal studies, all conducted “on our selection” (to borrow an Australianism from Steele Rudd), have already contributed much to our knowledge of diseases in Australia. Although they cover disparate topics and range in cohort size from several thousand to many tens of thousands of participants, there are some common elements to their stories: committed investigators who are capable of thinking into the future; dedicated and often longstanding research teams; sustained support and enthusiastic participation from the community; and the need to endure and persist through periods of extreme funding uncertainty. A striking feature of these longitudinal studies is their capacity to produce valuable results with relatively little funding overall — many of those interviewed said that their work had been conducted on “the smell of an oily rag”. Reports from the studies have been published in prestigious high-impact journals, such as Nature, the New England Journal of Medicine and the BMJ, as well as high audience-impact journals, such as the MJA, thus influencing discourse, attitudes and policy. These Aussie battlers are rightfully proud of their achievements, as are we. Despite some successes, none of the researchers are content to rest on their laurels. All are eyeing a future for their studies, carefully watching the emergent literature for new ideas that may be a natural fit for their study populations. Many are actively engaging productive collaborators in cutting-edge areas, like genetics, and seeking a greater international contribution through the integration and comparison of their data with those of others. Both of these advances are enabled by making their data available online. Does a longitudinal study have a natural lifespan? Maybe, but all our interviewees are more concerned that it will be a lack of funding rather than relevance or researcher interest that sounds the death-knell for their study. If these studies are stopped too soon, we will all miss out on “the gold coins at the end of the rainbow”. As Miller (from BEACH) said, “Enough of the past must be seen before we can begin to predict the future with any certainty”. To achieve sustainability, many argue that a different kind of funding is needed than that usually available to epidemiological researchers. Hopper (TAHS) said, “The work is generally funded by project grants, scientific project grants, but what is needed is core funding”. Several interviewees said there needed to be some sort of formal research policy providing long-term support to cohort studies. Whatever the lifespan of their own study turns out to be, most of the researchers want a future that is better for all longitudinal study investigators. WHA has published a practical guide to conducting longitudinal studies — how to store data, track people, manage collaborators and more.24 Dharmage (TAHS) dreams of establishing a supportive collaboration of longitudinal researchers, all helping each other forward. What will be the next great Australian longitudinal study? Zimmet (AusDiab) says the time is ripe for Australia to establish a comprehensive longitudinal national health survey, conducted every 5 years, which would give an idea of the burden of disease and the opportunity to monitor interventions. Hopper sees a future where the historically fostered culture of institutionalised non-cooperative research groups is turned on its head. “Even now, the concept of having national cohorts that are run as resources for the general scientific community is becoming more and more established. The general thinking is growing — not just in Australia but internationally — that these resources are precious, that they need to be open and accessible to a wide range of research; and that people who do research using these resources need to put that data back into the resource so that others can build on it.” Australian longitudinal research is making its mark in medicine at home and beyond. With renewed commitment, vision and adequate ongoing resources, we hope that these stories, and others like them, will continue. 1 On our selection: characteristics of some Australian longitudinal studies Study title Location Year of initiation No. in baseline cohort(s) Funding* No. of publications† Study website Initial funding Total funding The Australian Diabetes, Obesity and Lifestyle Study (AusDiab) National 1999 11 247 $1 500 000 $2 600 000 80 http://www.diabetes.com.au/research.php?regionID=181 Bettering the Evaluation And Care of Health (BEACH) National 1998 na $1 200 000 $11 000 000 53 http://www.fmrc.org.au/beach.htm The Blue Mountains Eye Study (BMES) Blue Mountains, NSW 1992 3654 $163 819 $7 255 400 332 http://www.cvr.org.au/bmes.htm The Busselton Health Study Busselton, WA 1966 5008 £6000 > $7 600 000 > 250 http://www.busseltonhealthstudy.com The Dubbo Study Dubbo, NSW 1988 2805 $250 000 $400 000 51 http://www.dubbostudy.org Tasmanian Longitudinal Health Study (TAHS) National 1968 45 900 nd $4 000 000‡ 30 — Wittenoom cohort studies Wittenoom, WA 1974 11 684 $50 000 > $4 000 000 100 http://www.sph.uwa.edu.au/go/research-programs/oee/schools-and-centres/schools/school-of-population-health/projects#asb Women’s Health Australia (WHA) National 1995 41 616 $3 500 000 > $18 000 000 252 http://www.alswh.org.au na = not applicable. nd = data not available. NSW = New South Wales. WA = Western Australia. * Amounts shown are estimates and may not include institutional funding for costs such as investigator salaries or postgraduate students, and may comprise a mix of federal funding, support from trusts and industry, and in-kind support from various states and territories. Total funding is an estimate of funding received so far. † Number of published (or in press) articles in peer-reviewed journals only. See study websites for details of other publications. ‡ TAHS funding information is only available since 1992. 2 Macular degeneration Neovascular macular degeneration in the right eye of a 71-year-old woman who smoked heavily. 3 Busselton, Western Australia At nearly 2 km, Busselton’s iconic jetty is the longest in the southern hemisphere. 4 Wittenoom miners Underground Wittenoom miners having a lunch break in a dusty crypt room.

Ann T Gregory MB BS, GradDipPopHealth · Ruth M Armstrong BMed · Tanya D Grassi MB BS(Hons), BSc(Vet)(Hons) · Bronwyn Gaut MB BS, DCH, DA · Martin B Van Der Weyden MD, FRACP, FRCPA

Saibai Island is the closest part of Australia to another country. Lying in the Torres Strait, off the tip of Cape York Peninsula, Queensland, the mangrove-rimmed mudflat is only 4 km from Papua New Guinea (PNG) — a mere 20 minutes in an outboard dinghy, but a journey from poverty to plenty in terms of health care for residents of the palm-thatched village of Mabaduwan, PNG, north of Saibai. Mothers bring their sick children to the primary health care centre in Saibai, and who can blame them? Once a dinghy beaches, a Rolls-Royce service is triggered. One mother recently brought her 1-month-old daughter to Saibai because she was sleepy and not feeding well. The carer in Saibai noted a full fontanelle and telephoned the administrative centre in Thursday Island, about 120 km away, at the tip of the Cape. A helicopter was sent to retrieve the mother and infant to Thursday Island, where hydrocephalus was suspected and advice was sought from the regional centre for neonatal care in north Queensland, in Townsville, about 1500 km south. The centre dispatched a retrieval team of doctor, nurse, incubator, ventilator and backpack of medicines to Thursday Island in a twin-engine King Air of the Royal Flying Doctor Service (RFDS). Thursday Island, however, is too small for a landing strip, so fixed-wing planes must land on nearby Horn Island, where passengers catch a bus to a jetty and then a barge across a fast-flowing strip of water to Thursday Island. Medical evacuations are facilitated by a small helicopter, which is based on Horn Island and hops back and forth. The retrieval team left Townsville as night fell, were helicoptered back and forth from Horn Island in the middle of the night and returned to Townsville just before dawn. They had confirmed the large fontanelle, floppiness, an unreactive left pupil, and a sluggish right pupil, and initiated ventilation for respiratory failure. In Townsville, ultrasonography revealed a massive lesion in the left cerebral hemisphere, which was confirmed by magnetic resonance imaging to be a tumour. Meanwhile, the mother, who spoke very little English and whose life to that day had been spent in rural simplicity, was plunged into the luxuries of our modern Parents’ Unit next to our busy intensive care ward: lamp-lit hut with split bamboo floor was exchanged for electric lights and carpet; wood cooking fire for microwave; sleeping mat for huge, sprung, blanketed mattress; tropical heat for refrigerated “comfort”; nocturnal silence for the cut, thrust and whistles of intensive care battle; and family and friends for armies of strangers contending at all hours. Worse, the trees near the beach had been replaced by a strange contraption, more like a well, and there was no sea water with which to clean herself. We wondered why she had chosen to sleep with the lights on until we realised she did not know how to turn them off. Why did she sleep on top of the bed, or was she sleeping on the carpet? We soon learned that she had no idea how to use the microwave and stove and, in any case, had no coins to turn them on so we, of course, provided food. Why did she devour the fruit and leave everything else? We learned she was ravenous for sweet potato and cassava and perhaps a piece of fish. We thought she might like to go outside, but she was terrified to leave the ward. The acres of parked cars and the traffic on roads running in all directions contrasted with the carless, unpaved pathways between huts in Mabaduwan. Not surprisingly, her mental health began to disintegrate, and she became so fearful she would not even go to the toilet unless accompanied by a nurse. We needed to talk to her — to explain things and get permission for the surgery —but were confounded by her dialect. Late on the Friday afternoon of her admission, we rang our translating service, the health clinic at Mabaduwan, the Saibai clinic, people who allegedly knew her husband on Saibai, her embassy, and various consulates to no avail, but as luck would have it, someone discovered a distant “cousin” who had a boy in our paediatric ward who had worked his way to Townsville from Mabaduwan in a similar manner. The cousin spoke English. Conversation about the apparent diagnosis, the remote chance for surgery, the risks of anaesthesia, and so on, was tricky and took quite a while, supplemented as it was with such basic information as how to use the bathroom, and reassurances that we were bringing a change of clothing. In the end, we convinced ourselves that the mother understood matters and agreed to surgery. Surgery revealed a fleshy mass infiltrating the brain, with necrosis and haemorrhage. Frozen section showed malignant glioblastoma. As much tumour las possible was removed, the wound closed and the baby returned to the ward, still ventilated. After the surgery was completed, conversation became even trickier as we tried to discuss the contending kindnesses of continuation or withdrawal of high-tech support. There was no doubt about mother’s continued retreat into herself. Ultimately, it was widely agreed to withdraw high-tech support and “let nature take its course” and, while the cousin was rallying a few friends to support the mother, we began to explore the ways of transporting mother and the baby’s corpse back to her village. She was adamant that she did not want to be separated from her daughter’s body, and we were keen to preserve what remained of her stability. It was clear that mother and daughter should travel together — one should not go with the luggage. Problems accumulated with each phone call. No commercial airline would even think of transporting a mother with a corpse in her arms. Discreetly wrapped? No way! How about in a small crib? Not on your life, mate. I tell you, we can’t sell a ticket to a corpse. Well then, how about doing us a favour and transporting the corpse free of charge in the luggage if we really have to do it that way? No chance — it is all tied up with regulations and corpses can only travel with the assistance of a qualified undertaker and in a proper casket. A funeral director was asked how much it would cost to transfer one small corpse to Saibai. At least $3000, was the reply which, we figured, was probably about 3000 times the mother’s accumulated wealth. Was there any chance the RFDS would take mother and corpse on a back load to Thursday Island? Its King Air is the only plane based in Townsville, and constant demands from the living relegate those of the dead to the bottom of the list. Moreover, there were certain rules about transporting corpses. What if we kept the baby alive, to be extubated on Thursday Island? Would the commercial airlines consider carrying a baby being discretely hand-ventilated by a nurse? It was not as if we were asking for room for our whole transport team and equipment. After all, that equipment is all we have and it, too, needed to be on call in Townsville for the needs of the living. At least the airlines considered this question, but later phoned to express regrets that other passengers in the small regional plane might be challenged by the phenomenon. Sensing it might be easier to transport the living than the dead, we postponed the extubation, which took a bit of explaining. Mother seemed to follow the logic, and phone calls to Saibai and Mabaduwan began to prepare for the possibility but, as night fell on the second day of fruitless organisation, there was no apparent answer to the problem. We hoped something would “turn up” in the morning. It did. The RFDS plane had been dispatched to pick up two adult patients in Cairns and bring them back to Townsville. Cairns is about halfway between Townsville and Thursday Island, and there was time to put in a “mercy” diversion to Thursday Island. The old problem of transporting corpses remained and it was very good the baby was still alive. We still did not want to be separated from our transport incubator for the journey, which was likely to take about 10 hours, and sent one of our experienced nurses to ventilate the baby by hand. It was not clear how we would get the baby from Thursday Island to Saibai but wondered if she could go with one of the regular field trips to those islands. On the other hand, perhaps the baby could be extubated on Thursday Island and mother and corpse could return to Saibai in some kind of unofficial way, for which the Torres Strait is renowned. As our time was limited, medical staff on Thursday Island agreed to meet our team on Horn Island from where the baby would be helicoptered to the hospital for extubation. This would be very helpful, but would involve four hops of the helicopter: to pick up a doctor or nurse from Thursday to meet the patient on Horn, to take her to the hospital and then return to base. Off flew our little group — up the coast over the Great Barrier Reef, then over the flat scrub of the Cape with its single four-wheel-drive track, determinedly heading for the tip where it would join the shore of the Gulf of Carpentaria, which had been receding from the west. Almost 3 hours after take-off, mother, baby and ventilating nurse alighted on red-soiled, sparsely treed Horn Island in the azure flows of the Torres Strait, to breathe the heavy, hot, watery air of the tropics. Mother was instantly at home. Nurse began instantly to perspire. Oddly, mother sighed “trees”. Did you not see any in Townsville, the nurse asked? Not one, said the mother, though the hospital is surrounded by them. Meanwhile, concerns had risen in the staff at Thursday Island when it was learned the child was returning for extubation at that hospital while her father and other family members were gathering on Saibai to see her before she died and to be with her when she did. It seemed heartless to pass a corpse on to the family and budget constraints joined the meltdown. A helicopter would be employed to return the baby and her mother from Horn to Saibai, and a nurse and experienced paramedic would go with her to continue hand ventilation. That helicopter was waiting on the airfield when our team arrived and in the hot haze of Horn, the child was passed from nurse to nurse and continued the journey home. Our team returned to Cairns. At about 4 pm, father was reunited with daughter but, taking her up, would not pass her on to anyone. He appeared to have been consumed by an isolating grief that excluded and even blamed his wife. Everyone was alarmed and no one really knew what to do, but time was passing and the helicopter needed to return before dark. With the sun low, the family gathered around the child and the tube was removed in expectant hush . . . but death did not follow. Stillness was punctuated by weak gasps that strengthened, quickened, and went on and on, all night, and into the morning when the family wondered if it would be all right to head off for Mabaduwan so the girl could see her grandparents. Something did expire that night — the bitterness of the father. In a transformation judged by the night nurse to be the most moving she had ever witnessed, father, mother and family were reunited. It was “the proudest moment” of the nurse’s career. At about 10 am, the dinghies were fired up and the family returned home, but I knew nothing of these latter events when, 2 days later, I took a call from the primary health care worker in the village in PNG. In broken English he explained the baby was now crying loudly, waving its arms and demanding food, and wondered if I had further advice? My English broke in reply. In retrospect, this medical venture had involved multiple sea trips, six helicopter flights, two ambulances, two long-haul plane retrievals with special staff on overtime, several days of life-supporting intensive care, neurosurgery, anaesthesia, medicines, laboratory investigations, social-work support, interminable phone calls, accommodation, meals, and changes of clothing . . . all for free. In return, a small girl lived for 6 months.

John S Whitehall FRACP, MRCP(UK), DCH

Chronic disease self-management emerged as an organised, formal entity in Australia in the 1980s, when a specific group-based program was introduced from the United States. This program, the Stanford Arthritis Self-Management Course, was promulgated in Australia and other countries by its creator, Professor Kate Lorig of Stanford University. The program showed much early promise, particularly with its dissemination and uptake by an enthusiastic non-government sector. Over subsequent years it has matured, and many other programs endeavouring to support patients to engage in self-management have been developed. In some ways, chronic disease self-management has become mainstream.1-3 In the late 1990s, the Australian Government Department of Health and Ageing began to invest large sums into exploring the utility of a wide range of chronic condition self-management models that could be suitable for the Australian health care system. This was facilitated through a new policy, the Sharing Health Care Initiative, which was supported by a substantial budget of $36.2 million. This initiative included large demonstration projects using care planning, action planning, medication review, coaching, self-help groups, formal chronic disease self-management programs and other modes of self-management support. At around the same time in the United Kingdom, an even larger initiative came into being — the Expert Patients Programme, in which thousands of people with chronic conditions participated in self-management education programs. Some of the key insights from the Australian4 and UK5 experiences, and to a lesser extent concurrent US6 and Canadian7,8 reports, were that self-management education was most effective when programs were tailored to patients’ needs, and were undertaken in collaboration with and integrated into primary care. A further prominent finding was the need for a “critical mass” of patients with chronic conditions ready and able to take part in such programs.9 With a greater range of programs and tools and a renewed emphasis on patient-centred care, a range of innovative programs emerged across Australia at state government and community health levels. By the mid 2000s, a great deal of innovation had been generated in this field. However, given the vast distances across Australia, much re-invention of the wheel (or possibly “flat tyres”, in some cases) seemed to be happening. The 2006–07 Australian Budget announcement introduced the Council of Australian Governments (COAG) Australian Better Health Initiative. Within this $500 million package for the prevention and management of chronic disease, a key element was generating better patient self-management activities. To support Australian, state and territory governments, health care providers and consumers in the “operationalisation” of chronic disease self-management across the health care and community sectors, it was evident that there was a need for a forum to provide an opportunity for key stakeholders to exchange information and ideas, and to discuss innovative ways of providing chronic disease self-management support. The Centre for Rheumatic Diseases at the University of Melbourne, which has been involved in several such national research and evaluation projects and has established research collaborations in the UK, the US, Canada and Europe,3,8 was well placed to organise such an event. Within a matter of months, keynote speakers were assembled and a “standing-room only” conference of 400 people was held.10 Funding to conduct the conference was provided by the Australian Government Department of Health and Ageing and the Victorian Department of Human Services. Entitled “The way forward: chronic disease self-management in Australia”,10 the conference brought together national and international leaders in the field to discuss the state of play and, more importantly, where it needed to go. Some of the papers presented at the conference are presented in greater detail in this supplement.

Richard H Osborne DipApplBio, BSc, PhD

Self-management has the potential to reduce the burden of chronic disease — but it needs to be integrated into the health system

Stanton P Newman DPhil, DipPsych, FBPS

Although emphasis on the prevention of chronic disease is important, governments in Australia need to balance this with continued assistance to the 77% of Australians reported to have at least one long-term medical condition. Self-management support is provided by health care and community services to enhance patients’ ability to care for their chronic conditions in a cooperative framework. In Australia, there is a range of self-management support initiatives that have targeted patients (most notably, chronic disease self-management education programs) and health professionals (financial incentives, education and training). To date, there has been little coordination or integration of these self-management initiatives to enhance the patient–health professional clinical encounter. If self-management support is to work, there is a need to better understand the infrastructure, systems and training that are required to engage the key stakeholders — patients, carers, health professionals, and health care organisations. A coordinated approach is required in implementing these elements within existing and new health service models to enhance uptake and sustainability.

Joanne E Jordan BSc, BA, MPH · Andrew M Briggs BSc(Physio)(Hons), PhD · Caroline A Brand BA, MPH, FRACP · Richard H Osborne DipApplBio, BSc, PhD

We examined research and implementation activities presented at the Centre for Rheumatic Diseases 2007 Conference and other selected literature to identify common themes and posit some “next steps” required to develop self-management programs in the Australian context. Self-management and self-management support are key aspects of optimal chronic disease care, and are effective if implemented appropriately. Health literacy is the foundation for self-management programs and should be fostered within the whole population. We should invest in research and evaluation of self-management because the evidence base is under-developed and inherently difficult to expand. Because patient, carer, clinician and organisational engagement with self-management and self-management support programs are uneven, we need to prioritise activities designed to engage known hard-to-reach groups. We should strive to improve integration of self-management into clinical, educational and workplace contexts. Education and psychological theories can help guide self-management support.

Nicholas J Glasgow MD, FRACGP, FAChPM · Yun-Hee Jeon BHSc(Nursing), MN, PhD · Stefan G Kraus BA, BEc · Carmen L Pearce-Brown RN, DipHSc, MCritCareN

Progressive reduction in trauma mortality and morbidity demands both peer-group and state registry evaluations, with ensuing recommendations implemented by a responsive state government trauma committee Between 1992 and 2005, the Consultative Committee on Road Traffic Fatalities in Victoria (CCRTF) conducted several studies evaluating trauma care delivery and management in consecutive victims of road traffic accidents who had received medical treatment but subsequently died.1-4 These studies found that, between 1992 and 1997, combined preventable/potentially preventable (P + PP) death rates* among patients who died after road accidents were unaltered (* respectively, survival prospects with optimal treatment assessed as ≥ 75%, and as 25%–74%).1,5 Similarly, the frequency of errors and deficiencies contributing to death was unchanged. In 1997, recommendations were made to reduce identified problems6 and, in response, the Victorian Government established a Ministerial Task Force on Trauma and Emergency Services to implement a statewide integrated trauma system to expedite early definitive care.7 Previously, while there had been one adult major trauma service (MTS) in Victoria (The Alfred Hospital), most patients were taken to their nearest public hospital, where P + PP death rates were two to three times higher than at the MTS.3 The statewide integrated trauma system, developed in stages from 2000, has a four-tiered structure, with public hospitals assigned to different service levels according to the complexity of care they provide.7 Implementation of the statewide trauma system involved the development of two additional MTSs in Melbourne (a second adult hospital managing a sufficient caseload of seriously injured patients, and a paediatric hospital) and the designation of 11 metropolitan hospitals, 9 regional hospitals and numerous primary injury services in small rural communities. Under the integrated system, major trauma patients are identified at the scene of injury according to specified anatomical, physiological and mechanistic criteria and transported to an MTS, provided that the anticipated transport time from the scene of injury will not exceed 30 minutes.7 Longer times are accepted for patients who are managed and transported by Advanced Trauma Life Support helicopter crews. Otherwise, the patient is triaged to the nearest designated hospital and, after resuscitation, stabilisation and communication with the hospital, transferred to an MTS if appropriate. Early communication with the hospital from the scene of injury facilitates immediate patient reception by a trauma team. The team is comprised of at least one emergency medicine consultant and surgical and anaesthetic registrars, with a consultant general surgeon attending within 20–30 minutes for time-critical patients. Directors of trauma services are accountable for improved management in the hospital through coordination, audit and feedback. The Victorian State Trauma Registry, established in 2001, monitors and reports on progress to the State Trauma Committee, which is responsible to the Minister for Health.8 In a recent study, the CCRTF compared management and outcomes of 245 consecutive road traffic fatality cases before (1997–1998) and 193 consecutive cases after (2002–2004) the implementation of the integrated trauma system.4 The proportion of these trauma patients with TRISS (Trauma and Injury Severity Score)9 survival prospects of ≥ 75% who subsequently died fell from 31% before to 22% after the introduction of the new trauma system. The proportion of major road trauma victims admitted to MTSs increased from 34% to 62%. More patients were attended by Advanced Trauma Life Support road and helicopter paramedics, with increased time spent by paramedics at the scene of injury and increased transport times. The per-patient number of deficiencies and errors contributing to death was significantly reduced overall, particularly in the emergency department. P + PP death rates fell from 36% to 28% (preventable deaths from 5% to 3%, and potentially preventable deaths from 31% to 25%). While P + PP death rates remained markedly lower at MTSs than at other hospitals, P + PP death rates before hospital arrival and within each of the four hospital groups did not significantly change. The overall reduction in P + PP mortality can largely be attributed to increased admissions to MTSs. Recently, the Victorian State Trauma Registry estimated that there was a 37% reduction in the likelihood of death among hospitalised major trauma patients in 2002–2006 compared with 2001–2002.8 This finding, supported by research by Cameron and colleagues reported in this issue of the Journal (→ A statewide system of trauma care in Victoria: effect on patient survival),10 is further evidence of overall improvement following introduction of the new trauma system. In response to the lack of improvement within each hospital group, the CCRTF established an interactive strategy with the trauma services. Based on the most recent CCRTF findings, consensus recommendations to counter ongoing system and clinical deficiencies were developed jointly with each trauma service.11 Persisting deficiencies in the Victorian system include the lack of Trauma Director/Coordinator appointments at many hospitals; failure to ensure compliance with protocols and guidelines; delays in communication and referral; insufficient intensive-care beds; and problems with coordination, audit and feedback.11 In addition, funding for independent peer-group review of trauma mortality has ceased. Panel studies (involving multidisciplinary peer-group evaluation of patient management), trauma registry data and population-based research indicate that mortality and morbidity are reduced following the introduction of integrated trauma systems and that continuing improvements can be achieved.12-15 Statewide trauma systems operate in all jurisdictions in Australia except for Tasmania, the Northern Territory and Western Australia (where one is pending). Independent peer-group review is currently limited to New South Wales, where some fatalities, pre-hospital care and interhospital transfer cases are evaluated. NSW and Queensland have state trauma committees. Key system weaknesses recognised by the state trauma committees of the Royal Australasian College of Surgeons include MTS caseload dilution in NSW following the development of 12 MTSs; lack of consultant staff attendance for the early management of severe trauma and critical decision making in NSW and South Australia; insufficient surgical and intensive-care beds in the Australian Capital Territory; and deficiencies in theatre access and lack of intensive-care beds and funding in Queensland. Although the initiation of statewide trauma systems in Australia has been a major advance, it is still awaited in three jurisdictions. The number of MTSs designated should allow sufficient caseload of severe injury at each MTS.16 Future quality improvement requires identification of ongoing deficiencies so that targeted countermeasures can be introduced and their effectiveness assessed. Identifying such deficiencies depends on continuing analysis of trauma registry data, complemented by independent peer review of preventable mortality to clarify factors contributing to death. Effective oversight by a state trauma committee is mandatory to ensure an adequate response to the findings of the audit process and to implement corrective actions. Meetings between audit personnel and hospital staff would further facilitate quality improvement. The creation of a national trauma council would help to coordinate and develop standardised quality assurance and improvement in trauma care delivery across all Australian states and territories. Finally, quality improvement remains dependent on the commitment of consultant staff to direct all phases of trauma care.

Francis T McDermott MD, FRACS, FRCS(Eng) · Stephen M Cordner FRCPath, FRCPA, DipCrim

Although there is evidence for the effectiveness of self-management support, there has been limited engagement of Australian general practice staff with self-management support provided by other services. Efforts to integrate self-management support into general practice have also been challenging, largely because of capacity constraints and the difficulties of incorporating it into existing work practices. A broader systemic approach is needed, including a collaborative approach between providers, a range of self-management support options, training of general practice staff, and changes to the organisation of services and the way in which they relate to each other. The expanding role of practice nurses, new models of integrated primary health care and changes to the role of the Divisions of General Practice present an opportunity for this to be incorporated “from the ground up”.

Mark F Harris FRACGP, MD · Anna M Williams BHlthSc, MPH · Sarah M Dennis MSc, PhD · Nicholas A Zwar MB BS, PhD · Gawaine Powell Davies BA(Hons), MHA

The Expert Patients Programme (EPP) is a central element of chronic disease management policy in the United Kingdom. It aims to deliver self-care support by developing peoples’ self-care skills, confidence and motivation to take more effective control over their long-term conditions. A large, national randomised controlled trial found that the EPP’s lay-led skills training was effective in improving self-efficacy and energy levels among patients with long-term conditions, and was likely to be cost-effective. Key questions remain as to whether existing outcome measures capture the core outcomes that are important to patients with long-term conditions. The development and evaluation of self-care support initiatives should take into account the extent to which self-care support initiatives can be integrated into peoples’ everyday lives, and the degree of fit with patients’ existing adaptations and strategies. Rather than being concentrated on a single course, central resources for self-management support should be directed at a variety of systems and interventions that are able to meet the wide range of needs of patients with chronic conditions.

Anne Rogers PhD · Anne Kennedy BSc, SRN, PhD · Peter Bower PhD · Caroline Gardner BSc · Claire Gately BSc, MSc · Victoria Lee PhD · David Reeves BSc, PhD · Gerry Richardson MSc, PhD

Objective: To determine whether the statewide system of trauma care introduced in 2000 has resulted in improved survival for all major trauma patients in Victoria.Design, setting and participants: Population-based cohort study using data from the Victorian State Trauma Registry (VSTR), a registry of all hospitalised major trauma patients in Victoria. The study included major trauma patients with an Injury Severity Score > 15 captured by the VSTR between July 2001 and June 2006.Main outcome measure: In-hospital mortality.Results: The number of major trauma cases captured by the registry rose from 1153 in 2001–02 to 1737 in 2005–06. Adjusting for key predictors of mortality, there was a significant overall reduction between 2001–02 and 2005–06 in the risk of death for patients treated in the trauma system (adjusted odds ratio [AOR], 0.62 [95% CI, 0.48–0.80]). The reduced risk of death was also significant when road trauma cases (AOR, 0.56 [95% CI, 0.39–0.80]) and serious head injury cases (AOR, 0.62 [95% CI, 0.46–0.83]) were analysed separately. The proportion of road trauma patients definitively treated at one of the three major trauma service (MTS) hospitals in Victoria rose by 7% over the 5-year period. Direct transfers from the scene of injury to MTS hospitals rose by 8% for all cases and 13% for road trauma cases over the same period.Conclusions: Introduction of a statewide trauma system was associated with a significant reduction in risk-adjusted mortality. Such inclusive systems of trauma care should be regarded as a minimum standard for health jurisdictions.

Peter A Cameron MB BS, FACEM · Belinda J Gabbe PhD · D James Cooper MB BS, MD, FJICM · Tony Walker BParamedStud, GDipEmergHth, MEd · Rodney Judson FRACS · John McNeil MB BS, FRACP, PhD

Osteoarthritis of the hip and knee is an increasingly common condition that is managed principally with lifestyle behaviour changes. Osteoarthritis management can be complex, as it typically affects older patients with multiple comorbidities. There is evidence that opportunities exist to improve uptake of evidence-based recommendations for care, especially for non-pharmacological interventions. The National Chronic Disease Strategy (NCDS) defines key components of programs designed to meet the needs of people with chronic conditions; one component is patient self-management. NCDS principles have been effectively integrated into chronic disease management programs for other conditions, but there is limited evidence of effectiveness for osteoarthritis programs. A comprehensive osteoarthritis management model that reflects NCDS policy is needed. Barriers to implementing such a model include poor integration of decision support, a lack of national infrastructure, workforce constraints and limited funding.

Caroline A Brand BA, MPH, FRACP

Despite the availability of a range of Australian self-management support programs targeting the individual patient and/or health professional, three-quarters of Australians have at least one long-term medical condition, suggesting that a more comprehensive public health approach is needed. Use of mass media to deliver community health messages is a well established public health strategy. It may enhance more targeted approaches with its ability to reach large numbers of people simultaneously, including those difficult to identify, high-risk groups and those difficult to reach through traditional medical delivery. By simultaneously influencing large numbers of people, well designed health messages have the potential to promote and maintain behavioural change over time. Back Pain: Don’t Take It Lying Down (1997–1999), a mass media campaign of the Victorian WorkCover Authority, can be seen as a prototype of a successful public health strategy designed to enhance people’s self-management abilities. One of the main messages of the campaign was that there is a lot you can do to help yourself, which emphasises shifting the responsibility of control onto the individual. The success of the campaign makes a compelling evidence-based case for using a similar strategy to enhance the self-management abilities of the population.

Rachelle Buchbinder MB BS(Hons), PhD, FRACP

Objective: To identify current prescribing and administration practices in relation to intravenous potassium chloride (IV KCl).Design and setting: A prospective multicentre assessment of IV KCl prescribing and administration at six public hospitals (three large metropolitan hospitals, a smaller metropolitan specialty hospital, and two rural hospitals) in Victoria between August and December 2006. Data were collected for either a 4-week period or for 200 IV KCl orders, whichever occurred first, in clinical areas where concentrated KCl ampoules were available.Main outcome measures: Number and type of IV KCl prescriptions and dose administrations; method of preparation and administration of each dose.Results: A total of 888 prescriptions and 1088 administrations were assessed across the six hospitals. There were 69 different types of orders for IV KCl, varying in either concentration or volume. KCl ampoules were used in 59% of all administrations of IV KCl. In instances where the prescription matched an available premixed IV KCl infusion, the premix was used on 89% of occasions.Conclusions: There is significant variability in the prescribing and administration of IV KCl in these Victorian hospitals. New formulations of premixed IV KCl infusions may enable the removal of ampoules from patient care areas. The medical profession can play a major role in driving the adoption of consistent practice and supporting and leading this important safety initiative.

Melita A Van de Vreede BPharm, MHSM, GradDipHospPharm · Sally G Wilson BPharm, PhD, GradDipHospPharm · Michael J Dooley BPharm, GradDipHospPharm

Since its election, the Rudd Labor Government has created 10 new advisory bodies in the health portfolio, in addition to the 100 or more that were already established. An expansive and devolved advisory system could improve the health policy-making process, but only if it is integrated into the processes of government. We outline eight simple and practical measures that, if implemented, would make Australia’s health advisory system more transparent and effective. Past experience shows that the most important factor governing the impact of health policy advisory bodies is political leadership.

Lesley M Russell BSc(Hons), BA, PhD · Anne-marie Boxall BApplSc(Physiotherapy), MPH(Hons), PhD · Stephen R Leeder MB, PhD, FRACP

A 50-year-old man presented with cough, wheeze, intermittent haemoptysis and progressive dyspnoea. He had no relevant past history. On examination, he was hypoxic but haemodynamically stable. Results of routine blood tests, including full blood count, urea and electrolyte levels, and erythrocyte sedimentation rate, were within normal ranges. Pulmonary function tests confirmed severe airway obstruction and diffusion impairment. A chest x-ray revealed multifocal areas of nodularity and consolidation in both lungs (Figure, A). A computed tomography scan showed thickening and calcification of the bronchial walls with multiple cavities and nodules throughout both lungs (Figure, B). A virtual bronchoscopy revealed irregular narrowing of the right main bronchus (Figure, C; arrows), and a bronchial biopsy confirmed pulmonary amyloidosis (light-chain type). Pulmonary amyloidosis occurs in three forms: tracheobronchial (the most common, which is limited to central airways and which this case exemplifies), diffuse and adenopathy-associated.1 Nearly all cases are of the light-chain type.2 Treatment is difficult and controversial; repeated bronchoscopic resection is conventional,3 but the role of external beam radiotherapy in tracheobronchial amyloidosis has also been described.4

Kshitij Mankad · Michael J Darby

To the Editor: Urinary stones are very common, with a cumulative lifetime incidence of 5%–15% and a recurrence rate of about 50%.1 Many new treatment techniques have been developed, but availability, particularly in public hospitals, is variable. The Greater Metropolitan Clinical Taskforce2 assessed patterns of treatment in patients requiring urological consultation who presented to the emergency departments (EDs) of 12 New South Wales public teaching hospitals in major centres that had a specialty urology registrar. Between February and September 2007, the urology registrar or specialist completed a survey on consecutive patients presenting with urolithiasis who agreed to participate. The survey contained questions on patient demographics, the position and size of the stone, and the preferred treatment option. One of us (J W H M) conducted a telephone interview with each patient to obtain details of treatment, and follow-up interviews at 3-monthly intervals (until treatment was completed or the study ended) to determine the outcome. Ninety-two patients entered the study: 64 men (mean age, 50.4 years) and 26 women (mean age, 47.8 years) (sex was not reported for two patients). Thirty-seven patients were subsequently treated in the public system, and the remainder in the private system, either using private health insurance or at their own expense. The preferred treatment option of the treating medical officer, usually the urology registrar, was nominated: non-operative (spontaneous stone expulsion) with or without calcium-channel blockers, 13 patients (received by 6); rigid ureteroscopy with grasper or lithoclast, 21 patients (18); rigid ureteroscopy with laser, 4 patients (4); flexible ureteroscopy with laser, 17 patients (2); percutaneous nephrolithotomy, 3 patients (3); extracorporeal shock wave lithotripsy, 6 patients (2); or “other”, 28 patients — of whom stent was specified in 24 (23). The preferred treatment option was not used for 34% of patients because it was not available at the hospital. The mean duration of treatment (defined as the period between initial ED presentation and final treatment episode) for patients with pelvi-ureteric or upper ureteric stones requiring more than one treatment episode is shown in the Box. Thirty-nine patients had stents inserted in the ED, of whom four did not reach definitive management by the end of the study. Of the remaining 35, 20 were public patients and 15 were private patients. Fourteen had stents in situ for more than 3 months and required a change of stent before initiation of definitive treatment to avoid encrustation; 12 of these patients had treatment in the public system. Despite the relatively small number of participants in this study, its findings on access to timely treatment for public patients should not be ignored. Management of kidney stones was heavily influenced by insurance status. Ureteric stents are intended to be temporary, but patients treated in the public system who had a stent inserted at initial presentation had a 60% (12/20) chance of still having it 3 months later, thus requiring a change of stent before definitive intervention — an unnecessary procedure that increases hospital re-admissions. Patients would be treated more efficiently and effectively with more timely access to appropriate resources. This is an unacceptable burden of morbidity for patients. Urgent action is required to improve the current state of care for public patients with kidney stones in NSW. Duration of treatment of public and private patients with a pelvi-ureteric junction or upper ureteric stone who required more than one treatment episode* Public patients (n = 18) Private patients (n = 18) Mean duration of treatment in weeks (95% CI) 18.3 (12.9–23.7) 6.2 (3.0–9.4) Range (weeks) 3.0–49.5 0.6–25 Difference in weeks (95% CI) 12.1 (5.5–18.7) P < 0.001 * Up to four treatment episodes.

Finlay Macneil · James W H Macneil · Kylie L Fraser · Andrew J Brooks

The draft Good Medical Practice code of professional conduct is now available for public comment and consultation Over the past few years, all medical boards in Australia have issued guidance to doctors about expected standards of medical practice. Most of these documents were adapted from Good Medical Practice, a code of conduct first issued by the General Medical Council of the United Kingdom in 1995.1 Given their shared origin, the various medical board guidelines have much in common, but they are not identical. On behalf of state and territory medical boards, the Australian Medical Council (AMC), through an expert working group, is developing good practice guidelines for the entire nation. This project is now well developed, and a draft Australian Good Medical Practice code2 is currently the subject of a consultation process with the medical profession and the community. The project deserves the attention of the medical profession. Indeed, the profession’s input is critical, principally to ensure that the proposed standards are realistic and consistent with current good practice. In addition, experience tells us that codes of practice are more likely to be followed when those affected have contributed to their development. A number of questions are likely to cross the minds of doctors. Why do we need a code of practice? Doesn’t the Australian Medical Association (AMA) issue a Code of Ethics?3 Who is drafting the new Code? Why is the community involved? Is this project related to the Council of Australian Governments (COAG) decision to introduce uniform national registration for all health professionals? Is the new Code to be enforceable, and by whom? The project began before the COAG decision, but the timing now makes it highly likely that the Australian Good Medical Practice code will be adopted as a starting point by the proposed national medical board. A national registration system will need national standards. These standards must reflect the considered views of both the medical profession and the community served by the profession. In effect, the national Code will amount to a declaration to the new national board from the profession and the community about the standards of medical practice expected in Australia. It is not intended to supplant the AMA Code of Ethics. Rather, it extends the principle-based AMA Code into an explicit statement to the community and the profession about standards of practice. The draft Code covers issues in detail, including providing good care, working with patients, working with other health professionals, minimising patient risk, ensuring the health of doctors, and doctors’ performance in teaching, supervising and conducting research (Box). The Code aims to define clear, nationally consistent standards of practice. To develop these, the AMC established an expert working group with strong clinical representation, and including the perspectives of junior doctors and medical students, medical regulators and educators, medical and health administrators, consumers and community groups, medical profession advocates, rural and Indigenous practitioners, and international medical graduates. This working group reviewed the codes of each of the state and territory medical boards, comparable initiatives in the UK, New Zealand, Canada and the United States, the professional standards documents of the specialist colleges, guidelines from the National Health and Medical Research Council (NHMRC) and the AMA Code of Ethics. How will the Australian Good Medical Practice code be used? Firstly, it will give all doctors and the broader community a clear understanding of what is expected of medical practitioners in Australia. Secondly, it is expected to be used in the assessment of complaints about doctors and allegations of unprofessional conduct. Currently, the legislation establishing state medical boards and defining their powers gives the existing codes slightly different status in different states, but in all cases the boards use their codes in assessing practitioners’ conduct. Practitioners who depart from the standards set out in these codes may need to justify their conduct. Serious or persistent failures to meet the standards may have consequences for a doctor’s registration. The legislation governing the new national medical board has not yet been written. However, as a number of boards currently have the power to regulate standards of medical practice and issue codes of practice to guide practitioners, it is likely that the national board will have these powers, and that the national Code will be applied in the same way. This Code is important for all practitioners, so please have your say. The Australian Government Department of Health and Ageing has funded a comprehensive national process, seeking involvement and feedback from the profession and the community across Australia through face-to-face meetings, an online survey and written submissions. The consultation process is open until 28 November. More information is available at <http://goodmedicalpractice.org.au>. Outline of the draft Australian Good Medical Practice code of professional conduct, August 2008 Providing good patient care is the core of good medical practice requires doctors to maintain high levels of competence and professional conduct includes assessment, planning of management and ensuring effective care involves shared decision making between patient and doctor Working with patients requires relationships based on openness, trust and good communication Working with other health care professionals requires respect for colleagues, teamwork and willingness to share information and resources Working within the health care system doctors have a responsibility to contribute to the effectiveness and efficiency of the health care system Minimising patient risk requires doctors to understand what to do if patient care is compromised and the importance of reporting and responding to adverse events Maintaining good standards of medical practice requires doctors to participate in relevant continuing professional development and credentialling, and to practise within their accepted scope of practice Professional behaviour doctors’ standard of behaviour must justify the respect and trust of the community Ensuring doctors’ health maintain own health and wellbeing and look after the health of colleagues Teaching, supervising and assessing important to the care of patients now and in the future Undertaking research vital in improving health of individuals and the population researchers carry particular responsibilities.

on behalf of the Australian Medical Council Code of Professional Conduct Working Group

Domestic medical graduate numbers will almost double between 2005 and 2012, necessitating substantial increases in supervision at prevocational and vocational levels. New approaches to resourcing and governance of training are needed to expand the capacity of the health system to deliver quality training; new settings will also be required to expand training capacity, while ensuring that trainees are exposed to a broad range of clinical experiences. With increasing demand for training placements, entry to specialty training is likely to become highly competitive; new vocational training positions must be created to ensure that bottlenecks in training do not occur and that training is not unnecessarily prolonged. Substantial increases in government funding will be required to employ the new prevocational workforce. The recent Modernising Medical Careers Inquiry in the United Kingdom offers important lessons for the workforce changes facing Australia, such as a “ring-fenced” budget that quarantines funding for medical education and training. Planning for the increasing cohorts must cover the training spectrum — from medical student to specialist. Students and trainees must be prospectively informed about how workforce changes will affect their career advancement.

Gregory J Fox MB BS(Hons), MIPH · Stephanie J Arnold BSc(Hons), MB BS(Hons)

To the Editor: Recent articles in the Journal describing endeavours to measure and classify the tasks of doctors are indicative of the re-emergence of work analysis and time and motion studies.1,2 While commending the authors on their endeavours, it is concerning that the articles state almost contradictory findings. Westbrook and colleagues reported that professional communication, social activities and meal breaks represented the greatest proportion of observed time.1 Zhu and colleagues reported that direct patient-related tasks accounted for 86% of intern time.2 Acknowledging the different contexts of the individual studies, the collective picture is one of confusion and may lead to misrepresentation of the work of doctors. We have also analysed the work of doctors using observational techniques.3 We built on work done in the United States4 that is underpinned by functional job analysis (FJA)5 to produce a list of tasks (task taxonomy) that describe the work in the acute-care setting, and coordination of roles between hospitals and the community.3,6 The task is the fundamental unit of work, and FJA describes each task in terms of behaviours and interdependencies between people, data and things for the achievement of the task. The method seeks to achieve quality information through adopting precise language descriptions and benchmarks for levels of tasks required for jobs.5 Data are recorded by means of a simple electronic tool.6 Our method captures contextual information about the service (eg, location of work) and rigid details about the observed tasks. We have presented our findings at the 5th Health Services and Policy Research Conference of the Health Services Research Association of Australia and New Zealand,6 and the Change Champions Skill Mix and Workforce Development conference, both in 2007. We found that doctors in the units studied spent about 11% of time on education and training, between 50% and 60% on direct clinical activities (depending on context and role), and less than 10% of time on non-clinical administration. We suggest that if observations are recorded according to the purpose of the output, what may appear to be “socialising” may, in fact, be waiting for something or someone. It is far more important to measure what the impediment to getting on with the job is, rather than inferring that socialising is the main activity. There is a need for a consistent task classification system that can be used across units and across professions to describe the work that is being performed. A common unit of measure would provide a strong foundation for collaboration and learning in work redesign projects across the nation. Without such a system, planning for the future and evaluation of new roles will continue to be hindered. To this end, we are happy to share the task taxonomy that we have developed, and welcome contact via email.

Mark Mackay · Pamela J Castle

To the Editor: The study of intern activities in Melbourne emergency departments (EDs) highlighted gaps in the ED training of interns.1 In particular, it was shown that interns undertake a low number of procedural tasks. Most did not perform urinary catheterisation, nasogastric tube insertion or reductions of fractures and dislocations, just some of the skills highlighted as important in the Australian Curriculum Framework for Junior Doctors (ACFJD).2 Time pressure on supervisors was cited as a reason for this. New South Wales will experience a doubling in the number of medical graduates in the next few years. Increased capacity in emergency terms will be needed. The reported capacity (available supervision, clinical workload and funding) in NSW EDs indicates that a shortage of terms could develop from 2011. The NSW Institute of Medical Education and Training (IMET) recently explored the educational validity of retaining the emergency term as a mandatory requirement for general registration3 in view of the reported limited capacity. IMET-accredited emergency term descriptions were reviewed and mapped against the “Common presenting problems and conditions” listed in the ACFJD. The study found that an ED term would likely provide exposure to most of the common conditions, many of which were unlikely to be encountered in other medical or surgical hospital rotations. The acute phase of key conditions, that all medical practitioners are expected to be able to recognise and treat appropriately, were often unique to the ED term. Further, most of the “Skills and procedures” for junior doctors were likely to be learned in the ED, and around 50% were not commonly experienced elsewhere. Many of the broader competencies of the curriculum such as “Doctor and society” are also covered in an ED term. The ED provides a unique context for learning, bridging community and hospital situations. The approach to acutely ill patients, with as yet undifferentiated problems, for whom JMOs learn to initiate treatment and appropriate investigations concurrently, cannot be reliably replicated elsewhere. Emergency departments bear the brunt of the growing demand for acute care from an ageing population with multiple comorbidities, and also of the growing demand for excellent and accountable postgraduate medical training. In NSW, about 30% of directors of prevocational training are ED physicians, reflecting their commitment to education. They typically supervise numerous trainees at a time. The educator role of ED physicians and other senior doctors in EDs is essential. Resources should be directed to supporting this role and enhancing the capacity of EDs to train medical graduates.

Belinda Doherty · Mark A Brown

The humanities offer tools for wise application of biomedical knowledge and promotion of humane medical care Writing in the New York Times, columnist David Brooks recently described a “distinct brand of social misfits” in “fields like law, medicine or politics, where a person’s identity is defined by career rank”.1 He fears that their childhoods may have been spent in domestic “achievatrons” that ensured their academic success but compromised their interpersonal skills. Brooks believes that American society produces a disproportionate number of people with a “rank-link imbalance”, which he described as “the social skills required to improve their social rank, but none of the social skills that lead to genuine bonding”. These people have opinions about everything and “treat their conversational partners the way the Nazis treated Poland. They crush initial resistance, and the onslaught of accumulated narcissism is finally too much to bear”.1 It is hard to know whether Australia has a disproportionate number of “misfits” in law, medicine or politics, but if this is the case, Brooks suggests that they are the people most likely to force their way to the top of their career ladder and make life miserable for the rest of us. One way of producing doctors (or lawyers or politicians) with a capacity for genuine bonding might be to broaden their education.2 However, physician and writer Rafael Campo argues that “no one has proven that injecting the humanities in any form into medical settings translates to more humane physicians or better cared-for patients”.3 Campo’s use of the word “injecting” is telling; it conveys a sense of the humanities as something foreign to medicine. To appreciate whether the humanities are indeed foreign to medicine, try to imagine a health care facility in which no ethical issues are explored, no lessons have been learnt from the past, no cultural awareness is displayed, no written words (other than technical communications) appear, and no books, films, television programs, plays or concerts are discussed by patients or staff. Imagine that there are no artworks, no music and no other aesthetically pleasing elements. Although some of our hospitals are admittedly run down, the products of the arts and humanities are nevertheless all around us. Two recent Australian examples illustrate why we need to draw on the humanities in health care. The first is the front cover of the 19 May 2008 issue of this Journal, which depicts the phrase “Sorry, the first step” spelt out in candles in front of Parliament House.4 Many doctors are indeed sorry that biomedical solutions to Indigenous health problems have been confounded by ignorance concerning Indigenous history and culture.5 Fortunately, the Indigenous Health Curriculum Framework prepared for the Committee of Deans of Australian Medical Schools gives priority to topics such as culture, self and diversity, Indigenous history and society, and models of health service delivery.6 All of these areas draw on knowledge and insights from the humanities. The arts also offer teaching resources that provide for better cultural understanding. Recent examples include the film Ten canoes, which imaginatively recreates the world of the Yolngu people; Kate Grenville’s novel The secret river, and Doris (Garimara) Pilkington’s book Follow the rabbit-proof fence and its subsequent film adaptation; and plays Murras, Coordah and The keepers, which explore the impact of government policies of forced removal. Such resources communicate and educate by being emotionally engaging. The second example relates to quality and safety in health care. Among the competencies outlined in the National Patient Safety Education Framework are communication skills, teamwork, leadership, honesty and respect.7 The intellectual foundations for these competencies lie in the medical humanities, in particular psychology, sociology, philosophy and ethics as applied to medical practice. Biomedicine puts at our disposal the tools for safe, effective health care; the humanities explore their wise application in practice. Certain educational approaches accommodate the humanities better than others.8 Problem-based learning and its variants engage students’ emotions by giving each patient a story. However, problem-based learning is easily subverted by ignoring or parodying the human, experiential features of clinical problems. Privileging biomedical subjects over the humanities quickly alerts students to what counts as knowledge.3 A good medical curriculum provides time and resources for emotional engagement, reflection, and independent, self-directed learning — qualities that characterise what is best about the study of the humanities.9 The human experience of illness is most powerfully conveyed to students by those who have first-hand knowledge. It can be supplemented by poems, novels and films that faithfully represent that experience: Iris, A beautiful mind and The sea inside (which explore dementia, schizophrenia and quadriplegia, respectively) are recent examples. The Medical Humanities website of New York University provides an extensive database of resources on literature, arts and medicine.10 In the United States, the Accreditation Council for Graduate Medical Education has identified compassionate patient care and professionalism among six required competencies for residents, which training programs must assess.11 It has been suggested that the humanities, and specifically bioethics, could contribute to resident education.12 However, it has been argued that time and effort would be better spent in humanising the US health care system itself.13 The humanities cannot make people behave well. The late John Eisenberg, Director of the Agency for Healthcare Research and Quality in the US, has shown that doctors respond to many different influences.14 Well intentioned educational interventions will not produce more humane doctors if their role models’ behaviour suggests that it is better to do well than to do good. Medical facilities are moral worlds15 in which humane behaviour is elicited by being treated humanely,16 both in medical schools and in clinical settings.17 The humanities provide insight into why people (including patients, doctors and politicians) behave as they do and have done in the past. Equipping students with such insight is a necessary but not a sufficient strategy in the never-ending battle with the rank-link misfits.

J Jill Gordon MPsychMed, PhD, FRACGP