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Health information system linkage and coordination are critical for increasing access to secondary prevention in Aboriginal health: a qualitative study

Michelle DiGiacomo BA MHSc (Hons) PhD*

Postdoctoral Research Fellow, Centre for Cardiovascular and Chronic Care

 Patricia M Davidson BA MEd PhD RN

Professor of Cardiovascular and Chronic Care

Curtin Health Innovation Research Institute, Curtin University of Technology, Chippendale, NSW, Australia

 Kate P Taylor BA MIH

Aboriginal Health Research and Professional Education Coordinator, Centre for International Health, Curtin Health Innovation Research Institute, Curtin University of Technology, Perth, WA, Australia

 Julie S Smith RN BSc

Secondary Prevention Project Officer

 Lyn Dimer EN

Aboriginal Health Coordinator

National Heart Foundation (Western Australia Division), Subiaco, WA, Australia

 Mohammed Ali MBBS PGDipPHC MMedSc

Lecturer, Centre for International Health, Curtin Health Innovation Research Institute, Curtin University of Technology, Perth, WA, Australia

 Marianne M Wood MBChB DPH BA

General Practitioner, Derbarl Yerrigan Health Service, East Perth, WA, Australia

 Timothy G Leahy MBBS MFM FRACGP

Public Health Medical Officer, Aboriginal Health Council of Western Australia, Perth, WA, Australia

 Sandra C Thompson BSc(Med) FAFPHM MPH PhD Grad Dipl Hlth Mngmt

Associate Professor, Centre for International Health, Curtin Health Innovation Research Institute, Curtin University of Technology, Perth, WA, Australia

*Corresponding Author:
Michelle DiGiacomo
Centre for Cardiovascular and Chronic Care
Curtin Health Innovation Research Institute (CHIRI)
Curtin University of Technology, 39 Regent Street
Chippendale, NSW 2008, Australia.
Tel: +61 (0)2 83997830
fax +61 (0)2 83997834
email: [email protected]

Received date: 21 September 2009 Accepted date: 3 December 2009

 
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Abstract

BackgroundAboriginal Australians have low rates of participation in cardiac rehabilitation (CR), despite having high rates of cardiovascular disease. Barriers to CR participation reflect multiple patientrelated issues. However, an examination of thebroader context of health service delivery design and implementation is needed. AimsTo identify health professionals’ perspectives of systems related barriers to implementation of the National Health and Medical Research Council (NHMRC)guidelines Strengthening Cardiac Rehabilitation and Secondary Prevention for Aboriginal and Torres Strait Islander Peoples.1 MethodSemi-structured interviews were conducted with health professionals involved in CR within mainstream and Aboriginal Community Controlled Health Services in Western Australia (WA). Thirty-eight health professionals from 17 services (ten rural, seven metropolitan) listed in the WA Directory of CR services and seven Aboriginal Medical Services in WA were interviewed.ResultsRespondents reported barriers encountered in health information management and the impact of access to CR services for Aboriginal people. Crucial issues identified by participants were: poor communication across the health care sector and between providers, inconsistent and insufficient data collection processes (particularlyrelating to Aboriginal ethnicity identification), and challenges resulting from multiple clinical informationsystems and incompatible technologies.ConclusionsThis study has demonstrated that inadequate information systems and communication strategies, particularly those representing the interface between primary and secondary care, contribute to the low participation rates of Aboriginal Australians in CR. Although these challenges are shared by non-Aboriginal Australians, the needs are greater for Aboriginal Australians and innovative solutions are required.

Keywords:

cardiac rehabilitation, health services, indigenous

What do we know?

Aboriginal Australians have high rates of morbidity and mortality related to cardiovascular disease. Cardiac rehabilitation is an evidence-based secondary prevention strategy that has low participation rates, particularly in Aboriginal Australians. Effective information sharing and communication across care sectors are both critical in improving outcomes from chronic disease.

What does this paper add?

This paper describes health professionals’ perceptions of the health communication issues impacting on delivering effective post-discharge care for Aboriginal people in WA. There is an absence of information systems tailored to retrieve clinically useful information in order to promote coordination of care. Referrals and transfers with inadequate information systems contribute to poor coordination and lack of follow-up. Cross-sectoral collaboration and communication are crucial to the sharing of health information to promote coordination of post-discharge care and attendance at CR. Primary care endorsement of CR is imperative to patients’ engagement in this secondary prevention initiative.

Introduction

Aboriginal Australians suffer a greater burden of disease and die younger than non-Aboriginal Australians.[2] They are twice as likely to suffer from cardiovascular disease (CVD) as non-Aboriginal Australians and premature mortality from CVD is the leading con-tributor to the Aboriginal life expectancy gap.[3] Cardiac rehabilitation (CR) is an evidence-based strategy to improve function, quality of life and survival rates following a cardiac event.[4] Despite this widely endorsed intervention,[5] participation rates in CR range between 10 and 30% in the Australian population.[6] These rates are even lower among Aboriginal people and the chal-lenges faced by Aboriginals and health professionals alike are complex and multifaceted.[7,8] Transportation difficulties and competing life pressures are common problems. These are likely to be amplified in the Aboriginal population in Western Australia (WA)

where the cultural insecurity of mainstream services, rurality, isolation and poverty challenge health service providers to deliver equitable access to care.[9]

Barriers to Aboriginal people’s participation in CR

Problems relating to communication, coordination, cultural safety and workforce have been cited as inhib-iting Aboriginal people’s involvement in CR.[1] These areas are indicative of flaws in the design and execution of health service delivery. In particular, the small numbers of Aboriginal and Torres Strait Islander people employed across the health workforce, difficulties in communication and education between service pro-viders and clients, poor discharge planning, fragmented continuity of care, poor linkages between primary, secondary and allied health services and significant under-involvement of Aboriginal clients, communities and services in the development, implementation and evaluation of CR programmes inhibit Aboriginal people’s participation.[1012]

Investigations in rural and remote areas have revealed barriers to participation in CR involving lack of services, long distances and a lack of transport to regional centres, health workforce shortages and high turnover.[13] In regional and urban centres, a lack of flexibility and responsiveness in CR programme struc-tures creates obstacles to participation.[13] Other reported barriers include lack of knowledge about CR by patients and health workers, costs and family issues.[14]

Systems-related barriers

Although documentation of barriers to CR partici-pation has previously highlighted multiple patient-related issues,[15] findings centering on Aboriginal par-ticipation in CR highlight a range of systems-based factors.[1] This is particularly concerning given that healthcare systems are vital to increasing individual participation in CR, are necessary in order to achieve sustainability of projects[16] and are critical in achieving improvements in chronic illness. Given the complex service delivery in Aboriginal communities, cross-sector collaboration and effective coordination and communication in primary care are necessary.[17] Wagner’s Chronic Care Model delineates systems issues as relating to clinical information systems and system delivery design within the context of community and policy frameworks.[17,18] Clinical information systems can assure access to data for individuals or populations and provide reminders for services and assistance with tracking and planning care.[18,19] An information system should at least function as a registry for a target population, provide timely reminders to primary care providers on gaps in guideline compliance and pro-vide feedback measures relevant to assessing quality of care.[20]

Previous investigations into clinical information systems in providing care to Aboriginal populations have shown systems-based failures to be associated with diminished clinical outcomes. In the case of a once successful chronic disease programme, a funding shortfall and computer system deficiencies, including problems with generating lists for screenings, treat-ments, diagnoses and test results, led to decreases in regular community testing, staff reassignment, aban-donment of the programme and deterioration of health outcomes.[21] Hoy et al[21] concluded that a successful and sustainable programme is reliant on commitment to ongoing chronic disease surveillance, treatment and education.

Systems-related barriers (termed ‘coordination’ bar-riers), revealed from a consultation process to inform guideline development concerning cardiac rehabilitation for Aboriginal people,[1] included inconsistent record-ing of Aboriginal and Torres Strait Islander status, failures to provide culturally sensitive care and edu-cation to Aboriginal inpatients, non-communication between different parts of the healthcare system, weak links between mainstream health and Aboriginal health services, inadequate discharge planning and follow-up of continuing care and medication regimes and a lack of coordination between different phases of CR.[1]

A cross-sectional assessment of chronic illness care systems was conducted in Northern Territory (NT) Aboriginal community health centres to improve understanding of Aboriginal primary care systems.[22] The clinical information system components assessed were population and patient registers, reminders and feedback to providers and patient treatment plans. Results indicated that despite wide adoption of com-puterised systems, high system complexity and lack of information technology (IT) maintenance and up-grade support hampered its potential benefits. It was found that IT systems often lacked the capacity (or were not used) to supply staff with population-based information on the quality of chronic illness care, had poorly integrated system components, had lim-ited sharing of information between out-of-clinic community programmes and clinical services and had less developed provision of feedback measures.

Delivery system design is defined as:

1 defining and distributing roles and tasks among team members

2  using planned interactions to support evidence-based care

3 providing clinical case management services for complex patients

4  ensuring regular follow-up by the care team and

5 considering and ensuring that patients understand and that care is culturally appropriate.[18,23]

Examples of delivery system design failures that can inhibit CR programmes include absence of local CR programmes, failure of doctors to refer, lack of clin-ician awareness of programme availability, absence of a dedicated CR coordinator with whom to liaise, insuf-ficient time to arrange referral, unfamiliarity of clin-icians and hospital CR coordinators with the referral process, distance and transport problems and inflex-ible structure and times of operation of traditional hospital-based programmes.[8] Studies have demonstrated a positive relationship between delivery system design and intermediate outcomes of diabetes care, underscoring the importance of investigating service deliv-ery models.[24,25]

In the light of these issues, Strengthening Cardiac Rehabilitation and Secondary Prevention for Aboriginal and Torres Strait Islander Peoples: a Guide for Health Professionals[1] was developed with the aim of providing definitive information to help better plan CR services for Aboriginal Australians. Topics central to the Guide-lines include cultural competence, the importance of engaging and supporting Aboriginal Health Workers (AHWs), linking with existing local services, ensuring community involvement at all stages, tailoring CR approaches to the needs of communities and developing supportive policies and procedures to sustain part-nerships and services. The Guidelines were distributed in 2006 to all Australian health facilities.

We undertook this study as part of a larger inves-tigation into the implementation of the Guidelines in Western Australia.[26] As health information systems are considered crucial to the provision of effective chronic care, this paper reports on health profes-sionals’ perceptions of such systems and the impact that these have on access to CR and post-discharge follow-up.

Methods

Health service organisations listed in the Directory of Western Australian Secondary Prevention Services[27] and Aboriginal Community Controlled Organisations in WA were eligible to participate in this study. Reasons for non-participation and exclusion from the study included being a private facility, servicing low num-bers of patients for CR and providing negligible services for Aboriginal people.

Procedure

Health professionals involved in CR or secondary prevention services at rural and metropolitan health services listed in the CR directory were contacted by a CR nurse who explained the study. Between November 2007 and June 2008, these health professionals were asked to participate in face-to-face semi-structured interviews which were conducted by a CR nurse, in conjunction with an Aboriginal nurse whenever poss-ible. The majority of interviews were conducted with a single informant, but in some cases more than one member of the CR team participated. Data collection concluded following participation of all eligible non-excluded services with health professionals available for participation within the data collection period. Respondents were asked about their awareness and implementation of the Guidelines, and for their per-spectives on barriers to their implementation.[26] Of particular interest were their perceptions of systems used within their services with regard to processes enacted upon and following discharge from hospital, CR referral, identifying Aboriginal ethnicity and barriers to accessing CR services. All but three interviews were audio-recorded, with the permission of participants. Recorded interviews were transcribed verbatim, while written notes were taken for those who declined audio recording. Data were analysed using thematic content analysis whereby participants’ responses were hand-coded or broken down into distinct units of mean-ing.[28] These codes were then continuously compared with one another to discover links between the cat-egories. Related categories were combined and com-pared to new data. Efforts to maximise reflexivity and rigour of the data occurred when the research team met to verify and clarify themes which emerged from the data.[29]

Results

Study participants were health professionals from 17 of the 31 organisations comprising the Directory of Western Australian Secondary Prevention Services[27] and staff at seven Aboriginal health services organis-ations. In total, 38 interviews were conducted each lasting between 30 and 90 minutes. While data reflecting aspects of health professionals’ awareness and imple-mentation of the Guidelines has been reported else-where,[26] this paper reports on barriers encountered in health information management and its impact on access to CR services for Aboriginal people in WA. Crucial issues identified by participants were: incon-sistent and insufficient data collection processes (par-ticularly relating to Aboriginal identification);

• multiple clinical information systems and incom-patible technologies

•challenges in the storage and retrieval of infor-mation

•communication across the healthcare sector and among providers.

Given these descriptions, the findings are presented accordingtoelementsofWagner’sChronicCareModel,[19] namely, delivery systems design and clinical infor-mation systems (Table 1). Examples presented in Table 1 highlight that it is the whole system of care that needs to work effectively to ensure the delivery of quality cardiac rehabilitation.

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Delivery system design barriers

The lack of coordination and communication between healthcare facilities and health professionals, particu-larly between hospitals and primary care, disadvan-tages both staff and patients. Respondents indicated that inadequate referral systems and a lack of aware-ness of available services in various regions were the main barriers to provision of CR to Aboriginal patients. Some hospital-based participants were un-aware of who to contact for additional information when seeking to link a patient to a local service. A lack of communication and subsequent referral pathways between hospitals and primary care meant patients were not followed up after discharge and therefore did not initiate CR. In many cases, there was no designated CR coordinator and there were few or no AHWs (much less an AHW designated as CVD contact/ coordinator) in any of the health facilities; positions considered necessary and appropriate to ensure the continuity of care of Aboriginal patients.

Several respondents stated that they had no system for identifying Aboriginal status, relying instead on making assumptions based on referring facility or physical appearance. Reasons discussed for not directly asking patients whether they were Aboriginal, despite the information being required on medical record forms, reflect participants’ lack of appreciation of the importance of this information and management oversight.

Clinical information system barriers

Respondents explained that many government health services and Aboriginal Community Controlled Health Services function independently and do not use com-patible clinical information management systems, thereby impeding information sharing, service linking and referral. Referral systems to primary care, includ-ing updating the primary care providers on what has been done and making recommendations for future management, were perceived as inadequate, with many Aboriginal patients in Perth lost to follow-up upon discharge. The large transient Aboriginal population in WA presents a challenge to health services given the impossibility of accessing patient records from other areas. Participants felt that improved IT systems and transfer of patient information, such as discharge details, would save staff time in taking patient histories and locating medical notes. The disparate clinical information systems likewise have different functional capacities, with some reported as not sensitive to comorbidities or having inadequate output options. These deficiencies exacerbate the challenges to follow-up of Aboriginal people recently discharged from hospital.

Discussion

This paper presents a description of health profes-sionals’ perceptions of health information issues im-pacting on Aboriginal people’s participation in CR in WA. A lack of communication and coordination of health information systems and processes to enable integrated and coordinated care and follow-up were seen as major barriers that could be readily addressed. Participants perceived lack of continuity of care brought about via disparate and non-collaborative IT systems, different processes and a lack of networks and part-nerships both within and between healthcare facilities throughout the state. Although these challenges are not unique to Aboriginal people,[19] it is likely that these are amplified for this population and play a significant role in contributing to inferior health outcomes.

A significant delivery system design flaw highlighted in the present study as well as in previous research involves inadequate referral systems, which are linked to workforce issues and coordination of CR referral processes.[8] In addition to the need for procedures to identify and refer eligible patients to existing pro-grammes to ensure the continuity of care critical to management of CVD,[30] attention must be paid to workforce allocation, support and development oppor-tunities for AHWs. Aboriginal Health Workers are instrumental in providing care to Aboriginal people in Australia as they foster access and assist the provision of culturally competent care.[31] A recent study exam-ining the effects of a cardiology-specific AHW in a metropolitan hospital in WA revealed improvements in culturally appropriate care and communication, a reduction in discharges against medical advice, pro-vision of cultural education, increases in inpatient contact time, improved follow-up practices and en-hanced patient referral linkages.[32] Importantly, AHWs are an integral and vital source of health information and a link to communities. Yet their numbers are few and their integration within and bridging to main-stream health systems remains undeveloped.[33]

The health information management issues presented in this paper reflect inherent limitations in informa-tion systems in the Australian healthcare system[34] and weaknesses in computerised clinical information sys-tems in Aboriginal primary care.[21,22] Collectively, these findings highlight the complex delivery design systems challenges relevant to Aboriginal health. Technologies already exist to enable interactive IT systems that can improve efficiency, however, such shifts would require the sharing of patient data across applications and jurisdictions and the enhancement of existing IT.[35] If not addressed at organisational and policy levels, these systems issues will continue to hinder improvements in Aboriginal health.

Progress has been made over the past decade in the recording of Aboriginal status for hospitalised patients in New South Wales, Victoria, Queensland, Western Australia, South Australia and the Northern Territory, however improvements are still needed to ensure appropriate allocation of resources to care for Abor-iginal people.[36] As was found in this study, hospital staff are sometimes reluctant to ask patients if they are of Aboriginal or Torres Strait Islander descent,[37,38] although it has been found that few patients mind being asked.[39] Previous studies have called for the development and use of standardised questions to provide patients with the opportunity to disclose their status,[39,40] and increasingly attention is being given to better identification overall of Aboriginality in patients, including within primary health care.[41] Despite the request for this information on paper and computer-based forms across various clinical information sys-tems in WA, our data show that staff sometimes fail to complete components important to care. The lack of documentation of Aboriginal status not only contrib-utes to funding deficits for Aboriginal health and wellbeing initiatives that require demonstration of a ‘critical mass’ of patients or participants, but also means that advice and support are not tailored ap-propriately.

Conclusion

In 1977, Wenger argued that ‘all aspects of the long-term care and rehabilitation of the patient after myocardial infarction must remain under the aegis of the primary physician, ultimately using the person-nel, facilities and services of the local community’.[42] This study has demonstrated that inadequate infor-mation systems and communication strategies con-tribute to low participation rates of Aboriginal Australians in CR, with too little emphasis being given to transfer of care by linking patients with primary care. Both Aboriginal and non-Aboriginal organis-ations in this study recognised the challenges of cross-sector collaboration, despite issues varying between regions. Although these challenges are common within the Australian health care system, the needs are greater among Aboriginal Australians. Leadership, organisa-tional commitment and innovative solutions are required and improving information exchange is a pivotal step in improving care. The limitations in information management identified in this study are of concern. Coordinated strategies to improve health information management, including methods to pro-mote Aboriginal identification within a framework of cultural competence, and effective mechanisms for sharing information across sectors are urgently needed. These systems based issues should be considered within the context of patient factors and provider character-istics. Overcoming endemic racism and increasing skills in cultural competence are also important solutions to improving the cardiovascular outcomes of Aboriginal Australians. Ensuring smooth transitions between primary, secondary and tertiary care are important  steps in ensuring that Aboriginal people receive ap-propriate and timely care.

Acknowledgements

The research team acknowledges the funding support of the WA Department of Health through the State Health Research Advisory Council and support from NHMRC Project, grant 479222. We thank colleagues Dr Tom Briffa, Ms Francine Eades, Ms Narelle Wilson and Mr Trevor Shilton for their assistance with this project and acknowledge the assistance of Royal Perth Hospital and the Heart Foundation of Australia (WA).

Funding

MD is a postdoctoral fellow funded by NHMRC 533547.

Ethical Approval

Ethical approval was obtained from the WA Aborigi-nal Health Information and Ethics Committee and a University Human Research Ethics Committee.

Peer Review

Not commissioned; externally peer reviewed.

Conflicts of Interest

None.

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