Specialist clinics in remote Australian Aboriginal ...

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communities: where rock art meets rocket science. Russell Gruen, Ross Bailie. Menzies School of Health Research, Charles Darwin University & Flinders ...
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Specialist clinics in remote Australian Aboriginal communities: where rock art meets rocket science Russell Gruen, Ross Bailie Menzies School of Health Research, Charles Darwin University & Flinders University Northern Territory Clinical School, Casuarina, Northern Territory, Australia

People in remote Aboriginal communities in the Northern Territory have greater morbidity and mortality than other Australians, but face considerable barriers when accessing hospital-based specialist services. The Specialist Outreach Service, which began in 1997, was a novel policy initiative to improve access by providing a regular multidisciplinary visiting specialist services to remote communities. It led to two interesting juxtapositions: that of ‘state of the art’ specialist services alongside under-resourced primary care in remote and relatively traditional Aboriginal communities; and that of attempts to develop an evidence base for the effectiveness of outreach, while meeting the short-term evaluative requirements of policy-makers. In this essay, first we describe the development of the service in the Northern Territory and its initial process evaluation. Through a Cochrane systematic review we then summarise the published research on the effectiveness of specialist outreach in improving access to tertiary and hospital-based care. Finally we describe the findings of an observational population-based study of the use of specialist services and the impact of outreach to three remote communities over 11 years. Specialist outreach improves access to specialist care and may lessen the demand for both outpatient and inpatient hospital care. Specialist outreach is, however, dependent on well-functioning primary care. According to the way in which outreach is conducted and the service is organised, it can either support primary care or it can hinder primary care and, as a result, reduce its own effectiveness. Journal of Health Services Research & Policy Vol 9 Suppl 2, 2004: S2: 56–62

# The Royal Society of Medicine Press Ltd 2004

Introduction Over half of Australia’s indigenous people but only 4% of medical specialists live outside major urban centres.1 Of all Australian states and territories, the Northern Territory (NT) is the most sparsely populated, and indigenous people constitute the greatest proportion of the total population. The NT covers an area five times that of the UK and 89% of the indigenous population live in discrete communities, three-quarters of which are more than 250 kilometres, and some as far as 1000 kilometres, from Darwin and Alice Springs where the nearest tertiary health services are located (Figure 1).2 Most remote indigenous communities have poor health care facilities.2 Although there are pressing primary care needs, specialist doctors also have important potential roles. Many of the conditions contributing to the 20-year lower life expectancy of indigenous Australians would appropriately involve some level of Russell Gruen MBBS, Surgical Research Fellow, Ross Bailie MD, Associate Professor of Public Health, Menzies School of Health Research, Charles Darwin University & Flinders University Northern Territory Clinical School, PO Box 41096, Casuarina, NT, 0811, Australia. Correspondence to: RG.

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Figure 1 Indigenous communities in Australia, showing the predominance in the NorthernTerritory (NT).17

specialist care. However, poverty of primary care in remote areas, geographic barriers, lack of public transport, poor communication between hospitals and remote clinics and between specialists and patients, and unfamiliar hospital processes limit the extent to which many indigenous Australians can benefit from specialist

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Specialist clinics in remote Australian Aboriginal communities

advice, investigations and procedures.3 For patients from remote communities, a hospital outpatient appointment requires at least three days, including the journey in each direction and accommodation in overcrowded urban hostels. Non-attendance rates of up to 40% at outpatient and operating theatre appointments suggest that many referred patients from remote communities do not receive intended specialist care.4,5 Improving access to mainstream health services is a goal of Aboriginal health policy.6 To improve access, the NT has a long history of a few specialists, mostly in general medicine and paediatrics, who have conducted visiting clinics, otherwise known as ‘specialist outreach.’ In the first policy initiative of its kind in Australia, the Commonwealth and NT governments funded a Specialist Outreach Service (SOS) Pilot Project that commenced in 1997. It was based on simple proposals from a Darwin-based surgeon and a gynaecologist who subsequently aroused interest and support from specialist colleges and the Australian Medical Association. The SOS aimed to improve access to specialist care through the provision of regular general surgery, gynaecology, ophthalmology, and otolaryngology visits to ten of the larger communities in the northern third of the NT, known as the ‘Top End.’ Specialists in each discipline visited each community between one and four times per year by small aircraft or four-wheel drive vehicles. Both new and follow-up patients were seen. The ophthalmologist used a portable slit-lamp for eye examinations, the gynaecologist brought a portable colposcope and an obstetric ultrasound, and the general surgeons carried a range of equipment for minor procedures such as sigmoidoscopy, haemorrhoidectomy, skin and breast biopsies, vasectomies and circumcisions (either for phimosis or requested for cultural reasons in children and early teenagers). Arrangements were made for more complex procedures to be performed in Darwin. Two full-time administrative staff had responsibilities for planning clinics, organising transport and accommodation, maintaining equipment, responding to specific requests from remote clinics, ensuring timely follow-up of patients and data collection.

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Furthermore, patients appreciated the familiar clinic environment and being able to have family and local staff attend consultations. All parties agreed that outreach improved communication between specialists and their patients and remote staff, and that this facilitated trust and helped support community-based primary care. Visiting specialists believed that outreach promoted their understanding of remote community contexts, which in turn was helpful for improving inpatient care and discharge planning. On the other hand, most specialists commented on difficulties integrating visits with other hospital roles and impositions on professional, personal and family time. Some criticised the disorderliness of outreach clinics compared with hospital outpatient clinics. Whether visiting specialists supported or hindered primary health care seemed largely dependent on the organisation and reliability of visits, and the willingness of specialists to build up locally available skills and knowledge. Primary care practitioners felt they and their patients benefited most when visits were well coordinated, there was time for joint consultations or education sessions and they received prompt correspondence. On the other hand, late cancellations of visits, poor coordination of patient lists and equipment, and inadequate attention to post-visit follow-up compounded the difficulties for already strained primary care services. In its first two years, the annual number of consultations between gynaecology and ophthalmology specialists from Royal Darwin Hospital (RDH) and patients from remote communities increased almost 400% to over 1000 (Figure 2). After the introduction of the outreach service more than 80% of consultations took place in the patients’ community settings. The number of consultations in hospital clinics decreased significantly. In general surgery, which had less intensive outreach, the number of consultations increased 160%.

Box 1 Potential bene¢ts of outreach, as perceived by remote indigenous and non-indigenous patients, clinic sta¡ and specialists7 . No need for patients to travel large distances ^ More patients seen ^ Less disruption to families and workplace, less cost of transport and accommodation

Preliminary evaluation of the Specialist Outreach Service Prior to renegotiation of funding after the SOS’s first three years, a programme evaluation was undertaken using semi-structured interviews with 25 providers, administrators, remote clinic staff and patients, and by examination of routinely collected data about utilisation of specialist services.3,5,7 There was widespread support for conducting consultations in patients’ communities (Box 1). Overcoming the need for patients to travel to hospital lessened disruption to patients’ families and work and lessened the administrative burden of remote clinic staff in organising appointments, travel and accommodation.

. Family and health staff in attendance ^ Improved practitioner and patient understanding of clinical and management issues ^ Improved doctor^patient communication . Specialist works within community context ^ Improved cultural appreciation by specialists and hospital systems . Specialist interaction with primary care practitioners ^ Improved communication between hospital staff and remote clinic staff ^ Education and training opportunities . Cost ^ Cost savings when compared with the transport of patients to regional centres

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Specialist clinics in remote Australian Aboriginal communities

Figure 2 Number of new and follow-up specialist consultations with patients from remote communities in hospitals and in outreach clinics.3

In contrast, there was no enduring effect from an orthopaedic surgeon’s visits over one year. In a simple cost-analysis we considered the costs of travel, accommodation and running the outreach service including specialists and administrative staff salaries. Although the SOS required additional resources, the average cost of each consultation was 38% lower in the community than it was if all these patients had been transported to RDH outpatient clinics. The findings of this evaluation contributed to the decision to extend the programme’s funding. However, this preliminary analysis also raised new questions. Most important was whether increased throughput and satisfaction reflected more appropriate use of specialists, improved access for those who needed it most and increased effectiveness of care. Routinely collected data shed no light on who was being seen and why, and whether increased consultations were due to new patients or follow-up visits. To address these issues, we conducted a systematic review of published evidence and a population-based study of the management of surgical disorders in remote communities, including the use of specialist services.

Systematic reviews of the effectiveness of specialist outreach Many models of visiting specialist services have been described. A systematic review of specialist outreach clinics in general practices in the UK found that most

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resembled outpatient clinics shifted from hospitals to primary care settings, and did not lead to greater interaction between specialists and general practitioners.8 In most cases, outcomes were limited to patient convenience, and outreach in the UK became an issue of whether that convenience was worth the added expense and the inconvenience for specialists. However, the NT context is vastly different. Access is not simply an issue of convenience but a matter of whether patients can obtain specialist care at all. Outreach is context-dependent and while there may be generalisable characteristics, the nature of the intervention and the most appropriate outcomes depend on the population being served. We undertook a Cochrane systematic review of the evidence about the effectiveness of specialist outreach, in which we stratified studies by population type and intervention type, as well as by evidence quality.9 One of our conclusions was that while the ‘shifted outpatients’ form of outreach that predominated in the UK was shown to improve access, improvements in clinical outcomes and changes in practitioner behaviour were only demonstrated in conjunction with more complex multifaceted interventions. These interventions included other changes to the provision of care, such as joint consultations, education sessions or care enhancements using printed or video materials, especially for the management of chronic diseases. We also found an inequitable distribution of higherquality evidence – favouring urban non-disadvantaged

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Table 1 Distribution of evidence determined in a Cochrane review of specialist outreach in primary care and rural hospital settings9 Setting

Cochrane level evidence

Comparative studies not meeting Cochrane inclusion criteria

Descriptive studies

Total

Urban ^ non disadvantaged ^ disadvantaged Rural ^ non disadvantaged ^ disadvantaged

7 0 1 1

12 1 4 0

16 6 14 11

35 7 19 12

Total

9

17

47

73

settings, particularly in the UK, the USA and Europe (Table 1). Many descriptive reports were identified from rural settings in Canada, the US, South America, Africa and Australia, but there was little evidence for or against the effectiveness of such services.

The Western Arnhem Land Longitudinal Surgery (WALLS) study of access to surgical care We conducted a retrospective before and after study to assess the effect of outreach clinics in remote indigenous communities on referral patterns, access and outcomes. Patients with surgical, gynaecological, ophthalmological and otolaryngological conditions presenting in three communities over an 11-year period spanning the introduction of the SOS were included. Data extraction and analysis followed a simplified model representing the possible sequence of events, from presentation at community clinics, through initial referral, initial specialist consultation, definitive treatment and follow-up (Figure 3). We compared the effects of surgical consultations being available in community ‘outreach’ clinics with hospital outpatient clinics. Baseline and intervention periods were defined by the frequency of outreach visits in each specialty to each community. We hypothesised that outreach visits would improve access, which could be measured through increased proportions of problems referred to specialists (RI), and increased rates at which initial specialist consultations occurred for referred patients (Rt, RC). We also hypothesised that outreach would lead to increased rates of definitive treatment (TC) through on-site procedures and increased rates of major procedures in hospital due to more effective referral.

A census of community-based medical records was the primary data source, with additional data obtained through merging those data with administrative data and hospital records using patient identifiers. Presentations and referrals were characterised using a range of problem, patient and community-based variables that were expected to affect access and use of services. The main outcomes of interest were rates of initial referral, completion of initial referrals and rates of definitive treatment of certain indicator conditions. A total of 2368 Aboriginal people were included in the study. Over the 11-year period they presented with 2339 surgical problems, of which 812 were referred to specialists, as well as 142 who presented directly to specialists without referral from primary care. Regular outreach clinics did not significantly increase the proportion of problems referred, but compared with patients referred to hospital outpatient departments those seen in outreach clinics had, on average, less severe and less urgent problems (Table 2). The commonest reason for referral to outreach clinics was women with gynaecological problems. Patients presenting directly to outreach clinics were mostly children and the elderly with ophthalmological or otolaryngological disorders. Without regular outreach clinics, 29.9% of referred patients never completed their referral by seeing a specialist. The most common uncompleted referrals were those made for diabetic retinopathy screening, cataract, fertility control and infertility, chronic suppurative otitis media, and procedures such as circumcision, ganglia and skin biopsies. Regular outreach clinics more often than every six months were associated with significantly better attendance. Outreach resulted in a shift of treatment to the community setting. Some diagnostic tests and procedures were for conditions that could be managed

Figure 3 Model used for data collection and analysis in the Western Arnhem Land Longitudinal Surgery Study.

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Table 2 E¡ect of specialist outreach on use of services by people from three remote Australian Aboriginal communities

1. Potential specialist problems electively referred 2. Elective referrals completeda 3. Patients without prior referral presenting ‘opportunistically’ to specialist clinicsa 4. Definitive ‘outpatient’ procedures that were performed at community clinicsa,c 5. Specialist consultations resulting in surgical procedures in hospitala,c

Regular outreach (46 months between visits)

No regular outreach Adjusted hazard ratio (46 months between visits)

40.2% 80.0% 28.9%

37.1% 70.1% 13.8%

1.22 (0.65^2.29) 1.41 (1.07^1.86) N/Ab

85.9%

52.9%

N/Ab

59.5%

79.4%

0.67 (0.43^1.03)

a Difference between percentages significant (P50.05); btime-to-event analysis not applicable; cspecified procedures defined as those able to be performed in outpatients and those requiring hospital inpatient treatment, respectively.

entirely as outpatients, such as colposcopy for low-grade cervical abnormalities, eye examinations and minor surgical procedures. When regular outreach clinics were available, the proportion of such procedures that was performed in community clinics increased by over 50%. Compared with consultations in hospital outpatient departments, specialist consultations in community clinics were associated with reduced rates of admission to hospital for treatment, especially for cataracts or female sterilisation. The differences remained significant when severity of illness and other patient, community and problem-based variables were taken into account. Ten out of 121 (8.3%) patients seen in outreach clinics refused surgery that was offered by specialists, compared with none of the 155 patients seen in hospital clinics. In summary, compared with hospital outpatient clinics alone, the provision of regular outreach clinics was associated with: a large number of ‘opportunistic’ self-referrals but no significant change to the proportion referred by primary care; a greater proportion of patients who were vulnerable to access barriers (children, the elderly and women) and those with less severe problems; an increased rate of attendance; an increase in procedures being performed in community settings without patients needing to travel; and reduced use of both hospital outpatient and inpatient facilities. These findings are contrary to the supply-induced demand for specialist services observed elsewhere.10 Two factors are likely to explain this: first Aboriginal patients rarely attend primary care clinics with an explicit request for referral to a specialist; and second, visiting nonspecialist medical officers and the staff who are resident in remote areas, including general practitioners, nurses and Aboriginal health workers, are broadly skilled and frequently deal with difficult management problems using advice provided over the telephone. We observed similar findings for rural general practitioners in a national study of referral practices.11 It was unexpected that outreach would be associated with reduced demand for inpatient as well as outpatient hospital services. The fact that patients seen in hospital clinics more often required planned for elective surgery than those seen in outreach clinics may be partly due to selection of patients by their willingness to travel to hospitals in the first place, but it may also reflect a

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greater tendency to book procedures and operations from hospital outpatient clinics, the seniority of specialists who provide outreach clinics compared with the use of junior staff in hospitals, or visiting specialists’ greater awareness, compared with junior hospital staff, of the difficulties patients face getting to hospital appointments. Furthermore, better communication in outreach clinics may result in more negotiated treatment plans and exploration of options other than surgery, suggested by the observation that 8.3% of patients seen in outreach clinics declined a hospital-based surgical procedure that was offered to them. We did not consider subsequent appointments or postoperative follow up. However, a previous study which enrolled 106 patients who had cataract surgery over a five-year period found that over half had postoperative problems that could be easily treated as outpatients, including provision of spectacles or laser treatment for posterior capsular opacities.12 The implication was that, without outreach-based follow up, the opportunities to improve most of these patients’ outcomes might not have been realised. Other dimensions that the WALLS study did not formally address, and which are areas for further exploration, include its educational impact, its effect on other dimensions of quality and a cost–benefit analysis.

Discussion While independent clinicians have previously instigated most specialist outreach in Australia, the SOS in the Top End was a novel government policy response to the inequities of access to health care faced by remote Aboriginal communities. A similar initiative in Alice Springs, the other centre with specialist services in the NT, has followed. The Australian government has also subsequently implemented a Medical Specialist Outreach Assistance Program (MSOAP) to address inequities of access to specialist care faced in all rural areas. Specialist outreach complements patient travel assistance and incentives to enhance and maintain the rural specialist workforce. The SOS policy was based on proposals from clinicians concerned about inequitable availability of services for remote Aboriginal people. The policy aligned with goals of improving access to mainstream

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Box 2

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Policy messages about specialist outreach in Australia

. Specialist health care is required for many problems experienced by Aboriginal people in remote areas but up to one-third of referred patients never see a specialist and up to 40% of patients booked for surgery don’t attend their appointment. . A Cochrane review found that specialist outreach improves access in urban settings and, under some conditions, improves clinical outcomes. However, few studies have examined specialist outreach in rural, disadvantaged settings. . A retrospective observational study in remote indigenous communities in northern Australia found that, after the introduction of regular outreach every 3 ^ 6 months by specialists in surgical disciplines, the proportion of patients referred to hospital outpatient clinics was halved, the rate at which referred patients obtained specialist consultations increased by 41%, the proportion of outpatient-based specialist procedures performed in communities increased from 53% to 86%, and the proportion of patients with certain conditions requiring inpatient care that were booked for treatment decreased from 79% to 59%. . Policy-makers in Australia are promoting specialist outreach for all rural areas with significant inequities in access to specialist care, even though there is little evidence for or against their effectiveness, and many other countries facing similar challenges have yet to experiment with specialist outreach. . Policy-makers should continue experimenting with coordinated, consistent and integrated specialist outreach clinics and evaluate their impact on accessibility, appropriateness and outcomes of care.

health services and support for comprehensive primary health care as articulated in national Aboriginal health policy agreements. It also tapped into a sense of adventure that many people have in the NT, where the climate is hot and harsh, where there are fewer comforts than in the cities in which most specialists were trained, and where outreach models of service delivery fit philosophically with how many perceive the NT working environment. As such, evidence played little role in policy development and, as our Cochrane review demonstrated, there is little evidence for or against the effectiveness of outreach services in rural and disadvantaged populations. Evidence can potentially contribute much more to optimising the sustainability of outreach and to critical analysis of how outreach fits in with other initiatives to improve health service delivery in these settings. When functioning well, outreach in rural and disadvantaged populations has the potential to overcome some, but not all, problems related to access (Box 2). It can also support and synergise with primary care, which itself contributes to the effectiveness of specialist outreach. There are two remaining concerns. The first is equity in the distribution of outreach services. While they are an improvement on hospital services, they are not currently available for all 80 remote primary care centres in the NT, nor could they be with the current specialist workforce or funding levels. Other means of improving access to specialist services, such as telemedicine, may confer some of the benefits of visiting services and be more widely distributed, although evidence of the effectiveness of telemedicine in improving outcomes and service use is also limited.13–16 At present the infrastructure and personnel for community-based telemedicine do not exist in the NT, and its development in conjunction with visiting services could potentially provide more comprehensive coverage. Teasing out further which are the most important components of outreach services will be important for such development.

The second concern is sustainability. Many previous policy initiatives in Aboriginal health have proved unsustainable, often due to insufficient long-term investments, dependence on a few charismatic individuals, or both. Understanding the needs of providers and recipients of the service, and aligning service delivery to meet those needs, are just as important as allocation of adequate resources. Neglect of any component will result in failure.7 Specialist outreach to rural and disadvantaged populations is a policy journey. For specialists it is about an alternative style of practice that involves journeying out of urban hospital-based consulting rooms to patients in remote areas. For policy-makers, specialist outreach is about a journey of discovery – trying and evaluating a novel approach to the particularly intransigent problem of improving Aboriginal health. For health services researchers, and those who fund them, there exists an opportunity to embark on a journey to improve the evidence about the effectiveness of such initiatives. Ultimately, however, specialist outreach is about overcoming the need for indigenous people in remote and profoundly disadvantaged communities to make difficult journeys to hospital clinics in order to obtain not rocket science, but the level of care that most Australians take for granted.

Acknowledgements The initial programme evaluation of the SOS was supported by Australian Commonwealth and Northern Territory Governments. RG has been supported by a Medical Postgraduate Award of the Australian National Health and Medical Research Council, a Surgeon Scientist Award of the Royal Australasian College of Surgeons, and a Harkness Fellowship in Health Care Policy from the Commonwealth Fund, New York. This paper draws together a number of separate pieces of work, to which many people have contributed, and who have been acknowledged in the relevant publications. We also acknowledge the generous assistance of Dr Sam Heard and Dr Zhiqiang Wang in designing and analysing the, as yet unpublished, population study data. We are also particularly grateful for the thoughtful critique of a previous draft of this paper by Associate Professor John Lavis of McMaster University, Canada.

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9. Gruen RL, Weeramanthri TS, Knight SE, Bailie RS. Specialist outreach clinics in primary care and rural hospital settings (Cochrane Review). In: The Cochrane Library. Issue 1, 2004. Chichester, UK: John Wiley & Sons, Ltd 10. Roland M, Morris R. Are referrals by general practitioners influenced by the availability of consultants? BMJ 1988; 297: 599–600 11. Gruen RL, Knox S, Britt H, Bailie RS. Where there is no surgeon: the effect of specialist proximity on general practitioners’ referral rates. Medical Journal of Australia 2002; 177: 111–115 12. Hewitt A, Verma N, Gruen R. Visual outcomes for remote Australian Aboriginal people after cataract surgery. Clinical & Experimental Ophthalmology 2001; 29: 68–74 13. Currell R, Urquhart C, Wainwright P, Lewis R. Telemedicine versus face to face patient care: effects on professional practice and health care outcomes (Cochrane Review). In: Cochrane Library. Issue 2, 2004. Chichester, UK: John Wiley & Sons, Ltd 14. Hailay D, Roine R, Ohinmaa A. Systematic review of evidence for the benefits of telemedicine. Journal of Telemedicine and Telecare 2002; 8(Suppl 1): 1–7 15. Wallace P, Haines A, Harrison R, Barber J, Thompson S, Jacklin P et al. Joint teleconsultations (virtual outreach) versus standard outpatient appointments for patients referred by their general practitioner for a specialist opinion: a randomised trial. Lancet 2002; 359: 1961–1968 16. Gruen RL. Joint teleconsultations improve satisfaction among people referred for a specialist opinion. Evidencebased Healthcare 2002; 6: 150–151 [commentary] 17. Bailie RS, Siciliano F, Dane G, Bevan L, Paradies Y, Carson B. Atlas of health-related infrastructure in discrete Indigenous communities. Melbourne: Aboriginal and Torres Strait Islander Commission (ATSIC), 2002

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