- Email: [email protected]
Secondary Prevention: The Heart Foundation's Experience in Driving Change through Advocacy
Accepted Manuscript Title: Secondary Prevention: The Heart Foundation’s Experience in Driving Change through Advocacy Author: Michelle Stewart Karen Page Rachael de Jong Rebecca Lee Robert Grenfell PII: DOI: Reference:
S1443-9506(15)00075-X http://dx.doi.org/doi:10.1016/j.hlc.2015.02.002 HLC 1792
To appear in: Received date: Revised date: Accepted date:
10-9-2014 14-1-2015 5-2-2015
Please cite this article as: Stewart M, Page K, de Jong R, Lee R, Grenfell R, Secondary Prevention: The Heart Foundation’s Experience in Driving Change through Advocacy, Heart, Lung and Circulation (2015), http://dx.doi.org/10.1016/j.hlc.2015.02.002 This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
Secondary Prevention HLC Publication 9 September 2014 Revised 10 November 2014 Revised 13 January 2015
Secondary Prevention: The Heart Foundation’s Experience in Driving Change through Advocacy.
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Running Head: Secondary Prevention Advocating for change
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Authors:
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1. Michelle Stewart, BHthSc1 2. Karen Page, DN2 3. Rachael de Jong, MPH3
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4. Rebecca Lee, MPH4 5. Robert Grenfell, MD, FAFPHM5
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Institution and Affiliations:
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1. National Heart Foundation of Australia, National Manager, Acute Coronary
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Syndromes
2. National Heart Foundation of Australia, National Manager, Health Equity and
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Secondary Prevention; Adjunct Professor, Deakin University. 3. National Heart Foundation of Australia, National Policy Officer, Cardiovascular Health 4. National Heart Foundation of Australia, National Project Officer, Health Equity and Secondary Prevention
5. National Heart Foundation of Australia, National Director, Cardiovascular Health
Corresponding Author: Dr Karen Page
Level 12 500 Collins Street Melbourne Vic 3000
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Ph: 03 9321 1570 [email protected]
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Abstract (200 words)
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Introduction
Heart disease is the leading single cause of death for men and women in Australia. There
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are 685,000 people living with heart disease, approximately 50% will be experiencing signs and symptoms of heart failure. This article aims to articulate the key advocacy activities
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required to improve the provision of evidence-based secondary prevention including cardiac
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rehabilitation and multidisciplinary chronic heart failure management services. Method
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The Heart Foundation undertook an extensive consultation process with many experts,
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policy makers, health and public health professionals through forums, evidence reviews and working groups. A range of actions are required to improve access to secondary prevention,
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but only those that the Heart Foundation could drive and support have been included. Results
The results identified three synergistic advocacy areas between heart failure and cardiac rehabilitation to drive secondary prevention advocacy. These were data, policy and people. Discussion
The priority actions are discrete and tangible to progress rather than revisit established evidence-based recommendations, and to support uptake and implementation at a national and state/territory level. We must consider the current landscape within which secondary
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prevention sits and identify the intersecting barriers and enablers that can be influenced. There is no single solution or lever for change.
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Conclusion Best-practice management of heart disease can be achieved through a co-ordinated effort to
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implement system change. Focus should be paid to a multi-faceted approach in the key
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advocacy areas identified here – data, policy and people – as these will provide benefit across the disease continuum, from secondary prevention and cardiac rehabilitation through
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to heart failure management. Keywords:
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Heart failure
Health care reform
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Health policy
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Secondary prevention
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Cardiac rehabilitation
Patient advocacy
Acknowledgements
National Heart Foundation of Australia Cardiac Rehabilitation Advocacy Strategy Expert Working Group
National Heart Foundation of Australia Chronic Heart Failure Systems of Care Expert Working Group System of care for chronic heart failure expert roundtable members Disclosures
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The Heart Foundation did not receive any funding to complete this work.
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Secondary Prevention HLC Publication 9 September 2014 Revised 10 November 2014 Revised 13 January 2015
INTRODUCTION Heart disease is the leading single cause of death for men and women in Australia. Every 15
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minutes someone experiences a myocardial infarction equating to 55,000 Australians a year1; there are 685,000 people living with heart disease, approximately 50% will also be
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experiencing signs and symptoms of heart failure2, 3. In 2010, there were 25,773 hospital separations recorded due to repeat acute coronary syndrome (ACS) events and this is
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expected to rise to 34,519 by 20204. The direct cost of these repeat events to the Australian health care system is estimated to be $613 million and the indirect costs are estimated at
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$96 million due to loss of productivity and economic efficiencies4 . Overall, in Australia, the financial cost of all ACS events in 2010 was estimated to be nearly $5.1 billion, with repeat
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events accounting for approximately one third of this cost4 .
The majority of individuals experiencing ACS and/or heart failure are eligible for a referral to
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a secondary prevention program. Examples of evidence-based secondary prevention
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management services5.
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strategies for heart disease include cardiac rehabilitation services and multidisciplinary CHF
These programs can vary in content, delivery mode and setting depending on whether they are addressing risk factor modification following an ACS event or ongoing management of heart failure. However, at an individual and population level the benefits of these programs are well established and include improved quality of life6, and reductions in morbidity, mortality and hospital admissions7, 8 Despite these well established benefits program attendance is poor. In Australia, participation rates can be as low as 25%9; Aboriginal and Torres Strait Islander peoples are less likely to participate than non-Indigenous Australians, despite being twice as likely to die from heart disease 10.
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The barriers associated with poor attendance have been extensively documented11 and across Australia there is growing momentum for system reform. Systematic change is
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important to achieve consistency of quality service delivery regardless of a patient’s status or location. Across ACS and heart failure there are many apparent indicators of non–guideline based management, poor coordination and communication, and recurrent hospital
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admissions12. Reform across secondary prevention to address these gaps remains a
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pressing concern. In 2009, the Heart Foundation undertook an extensive consultative process to inform a policy paper entitled ‘Secondary Prevention of Cardiovascular Disease:
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a call to action to improve the health of Australians’ 3. This paper outlined key action areas to improve the provision of secondary prevention. More recently in 2013, The George Institute
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Summit Blueprint for Reform for secondary prevention13 and the Heart Foundation’s Consensus Statement A Systematic Approach to Chronic Heart Failure Care: a Consensus
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Statement identified similar themes. These policy documents articulate the evidence-based
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practices necessary to influence system change and improve care delivery. Advocacy is one of the main tools that the Heart Foundation undertakes to achieve system
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change at national and local levels. Advocacy can be thought of as “the pursuit of influencing outcomes – including public policy and resource allocation decisions within political, economic, and social systems and institutions – that directly affect people’s lives” 14. Sometimes known as ‘the art of persuasion’, advocacy is simply the process of influencing people to create change. Its lifeblood is good strategic communications, educating people about a need and mobilising them to meet it 15.The purpose of this paper is to articulate advocacy strategies identified to achieve improvements to the provision of secondary prevention care and care delivery in Australia. This article acknowledges that cardiac rehabilitation and heart failure are separate and different entities on the secondary prevention care continuum. Both of these areas are supported by separate clinical practice guidelines and have many similarities but also unique differences in care and care delivery. 8
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Despite these differences, the issues and advocacy activities at a National, State and Territory level share many parallels, which this paper will articulate.
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METHODS Complex systems mapping, also referred to as a fishbone analysis, is a form of root cause
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analysis and is increasingly being used to inform quality initiatives in health 16. Complex
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Systems Analysis requires agreement on a problem statement (effect), in this case a lack of system refinement to improve secondary prevention care. The causes of the problem
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provide the branches and indicate causal relationships. 16
In 2013, several brainstorming sessions were held with a strategic group of key individuals
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across the Heart Foundation to undertake a Complex Systems Analysis for secondary prevention which identified the major causes of the problem. The key individuals included
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the Director of Cardiovascular Health, the Chief Medical Advisor, Secondary Prevention
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Managers, Government Relations staff, and secondary prevention working group members. As this was an internal piece of work for the Heart Foundation participants were recruited
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internally from the organisation. All participants were aware of the key secondary prevention documents 13
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. Participants were then requested to identify advocacy priorities that could
assist to address these causes.
RESULTS
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Secondary Prevention HLC Publication 9 September 2014 Revised 10 November 2014 Revised 13 January 2015
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Figure One: Complex Systems Mapping – Secondary Prevention & Heart Failure.
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The Complex Systems Analysis (Figure One) undertaken for secondary prevention and heart failure identified three key advocacy areas for quality improvement activities: data,
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policy and people. The first advocacy area ‘access to meaningful data’ will allow for measurement and benchmarking of health care activities identifying gaps and strengths to drive quality improvement, while also supporting quality research. The second advocacy area of ‘policy’ identifies strong need for a national standardised approach to both secondary prevention and heart failure care, coupled with sustainable funding and strong referral pathways for all patients. The third advocacy area of ‘people’ identifies the need for a strong workforce with the capacity and capability to support secondary prevention and heart failure patients as well as ensuring consumers are aware of the services and care available to them.
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Box One: Secondary Prevention Advocacy Priorities Data: Access to meaningful quality data for benchmarking and service provision including a
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set of national indicators and standards for secondary prevention care to evaluate, inform and improve the systems of care 3, 5.
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Policies: ACS Clinical Care Standard (under development) to incorporate a quality
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statement addressing secondary prevention as a standard component of the acute episode of care.
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People: Engage all levels of health professionals and consumers to support the promotion of secondary prevention services as a critical component of care.
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Data
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As identified in Figure One, access to meaningful, effective and comparable data was seen as essential for informing quality improvement activities at all levels including government,
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clinical, research and individual 2, 3. Data and monitoring were viewed as providing a
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mechanism for identifying improvement through benchmarking. Based on this, an advocacy priority for ‘data’ was developed (Box One). Policies
A major stumbling block towards integrated secondary prevention in the patient journey for all people with cardiovascular disease was perceived to be the lack of Federal Government policy. A national standardised approach to secondary prevention and heart failure management, coupled with clear sustainable funding and clear referral pathways, as indicated by Figure One, would inform the standard of care required. The standard will be provided irrespective of patient’s location, as well as supporting locally initiated policies at both a state government and health service level. In addition, there was a recognised need 11
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for funding policies to address the demand for the sustainable funding models. Based on this, an advocacy priority for ‘policies’ was developed (Box One).
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People The ‘people’ arm of the Complex System Analysis (Figure One) identifies the need for a
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workforce that has the capacity and capability to embed secondary prevention and heart
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failure management as a standard component of care. From a consumer perspective, awareness needs to emphasise the importance of seeking and attending cardiac
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rehabilitation to reduce the risk of subsequent cardiac events and the potential advance to heart failure. Patients also need to be made aware of care practices for their condition no
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matter where they are on their secondary prevention journey. Based on this, an advocacy priority for ‘people’ was developed (Box One).
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DISCUSSION
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Advocacy has no prescribed or clearly determined method but involves finding the best combination of strategies to further the cause. In this instance, the aims of the advocacy
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strategies were to inform the policy and associated system changes required to support delivery of evidence-based care, as well as to assist health departments, health network administrators, clinicians and consumers in improving care systems for people living with heart disease. The intended audiences were policymakers, health system managers, consumers, and health professionals across acute and primary care, including cardiologists, general practitioners, nurses, dietitians and other members of the multidisciplinary team. Data (Box One) Access to meaningful, effective and comparable data is essential for informing quality improvement activities at all levels including government, clinical and individual 2, 3. Data and its monitoring provide the means to identify health service delivery gaps, strengths, 12
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weaknesses and areas for improvement 2. Quality data enables improvement initiatives to be evaluated and provides the ability to identify adverse events 2, 3. Data “ … is fundamental
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because any quality improvement is dependent on the capacity to measure change in processes and outcomes, and on stakeholders having access to the information that
determining the effectiveness and cost of individual treatment2.
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changes what they do”18. The collection of outcomes data is the only accurate way of
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SNAPSHOT ACS collected the most recent data for the provision of cardiac services in Australia. This two-week audit (undertaken in May 2012) collected data on the care and
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outcomes among patients with suspected and diagnosed ACS from more than 470 hospitals across Australia and New Zealand19. This audit identified significant variations in care and
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will inform future monitoring and benchmarking of cardiac care improvements. Further analysis of the secondary prevention component of the data found that only 27% of patients
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with ACS received optimal in-hospital preventive care9. ‘Optimal care’ means receiving
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lifestyle advice (exercise or diet advice or smoking advice for current smokers), referral to cardiac rehabilitation and prescription of secondary prevention drugs (four out of five
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medications)9. Patients admitted to hospital for an ST-elevation myocardial infarction (STEMI), non ST-elevation myocardial infarction (NSTEMI), percutaneous coronary intervention (PCI), coronary artery bypass grafts (CABG) or who had history of hypertension were more likely to receive optimal preventive care9. Older patients (>70yrs) and patients admitted to private hospital were less likely to receive optimal care9. Recently, the Victorian Government has identified heart failure as a priority area. It is one of the top three index admission diagnostic related groups (DRG) associated with the greatest bed day utilisation for unplanned readmissions in Victoria20. It is estimated that in the state there are approximately 100,000 people living with heart failure and for all diagnosed cases, there is one undiagnosed case20. A simple chronic heart failure admission (DRG 62B) costs 13
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approximately $3440 while a more complex admission (DRG 62A) costs $7260. Based on an estimate of 2000 readmissions per year, the annual cost of hospitals stays ranges from
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$6.8 to 14.5 million for the state2. In response to this growing problem, the Victorian Government, led by the Health Innovation
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and Reform Council (HIRC), has proposed a project with the specific aim of developing a whole-of-system understanding of barriers and enablers to improve outcomes for people
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with heart failure20. This project will focus on understanding system performance for readmissions for heart failure, provide clinician and health service performance information,
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identify care variation, and support implementation of evidence-based care20.
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Across Australia, no state or territory except South Australia collects a minimum data set for either cardiac rehabilitation or heart failure across the acute or primary care settings. However, the Queensland Government has incorporated some core data collection and
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monitoring components into their heart failure state plan currently in development20.
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Presently, there has been no commitment to the development of national data definitions or
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standardised health outcome measures for secondary prevention to evaluate the effectiveness of care systems 2. The Heart Foundation has proposed a health outcome measure of “12-month event-free survival” for those presenting to hospital with heart failure21; an event is defined as an emergency presentation, hospitalisation and premature death22. This outcome will be used to measure care effectiveness and provide a benchmark for Australia for comparison with international data2. Policies (Box One) A Clinical Care Standard provides a small number of quality statements that describe the clinical care that a patient should be offered for a specific clinical condition. It has the potential to reduce unwarranted care variation, which cannot be explained by the clinical 14
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circumstances or personal choices of the patient. It has been identified that unwarranted variation in care occurs when there is: a gap between what we know of the evidence and the
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actual care delivered - either misuse (or errors) doing something incorrectly and harming people; overuse of treatments or procedures that have no recognised benefit; and opposing
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underuse of treatments that provide benefit23.
The Heart Foundation has undertaken significant advocacy work to support the formulation
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of the ACS Clinical Care Standard (ACS CCS), under the leadership of the Australian Commission on Safety and Quality in Health Care (ACSQHC). The ACS CCS will provide a
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small number of quality statements that describe the clinical care that a patient should be offered for ACS and includes a secondary prevention quality statement23. Recently released,
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the inclusion of this statement will embed the provision of secondary prevention strategies as a standard component of the acute episode of care, including referral to cardiac
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rehabilitation throughout Australia24.
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Overall, the standard will support people receiving care by providing an expectation of what
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to anticipate from their health care system. Health care professionals will receive evidencebased information to guide decisions about appropriate care and enable health care services to examine the performance of their organisation and make improvements in the care they provide. The standard will also provide a tool for measuring the impact of quality improvement activities and to identify adverse events or medical errors caused by inadequate information 2, 3. People (Box One) Effective secondary prevention requires the coordination of a multidisciplinary team across clinical settings. This team approach supports better patient outcomes. Unfortunately, there is a lack of recognition by clinicians of the gaps in secondary prevention strategies25 and 15
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scepticism over their benefits 26. With the evolution of the generalised chronic disease care model and limited resources, the emphasis on specialised secondary prevention services is being diluted. However, with an ageing population there is an increasing need for a
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specialised, multidisciplinary chronic disease workforce2. This includes supporting
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collaborative models of care that integrate services from hospital to community 26.The health workforce is in an influential position to be the voice for patients and steer system change to
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improve services. Given the importance of this work, activation of these priorities has already commenced.
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In Victoria, a number of pilot initiatives identified that delivery of in-hospital patient information (Phase One Cardiac Rehabilitation) is often fragmented, highly variable, and in
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some cases, absent. A resource is being developed which will facilitate effective patient engagement by providing a six-step guide for nurses on the key information that should be
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given to patients prior to hospital discharge. The resource will be presented as a checklist
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that can be embedded into hospital systems, building understanding and confidence about the Phase One information required. This reinforces the critical role hospital nurses have in
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initiating measures for secondary prevention including referral to cardiac rehabilitation and risk factor modification.
In Queensland, a clinical engagement toolkit to improve cardiac rehabilitation and heart failure services has been developed by the Heart Foundation and distributed to health professionals and health administrators across the state27. The toolkit provides recommendations to support clinicians in becoming advocates for cardiac rehabilitation and heart failure services in Queensland. It was developed in response to the increasing threat to these specialised services due to a number of health reform initiatives that do not deem them as essential frontline services. LIMITATIONS 16
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The principal objective of this strategy was to define the Heart Foundation’s role in improving service provision. As such, only actions that could and should be driven by the Heart
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Foundation were included. There is obviously a range of other actions that are required to improve cardiac secondary prevention services, but these were considered out of scope and
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are therefore not included.
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CONCLUSIONS[rl1]
From the outset, it was acknowledged that to improve the provision of secondary prevention, in Australia, there is not a single solution or lever for change. We must consider the current
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landscape within which secondary prevention sits and identify the intersecting barriers and
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enablers that can be influenced.
The aim of this approach was to clearly articulate the problem and the associated causes
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with the appropriate advocacy ask to ameliorate their impact. The priority advocacy actions
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were crafted to be discrete, to progress rather then revisit established evidence-based recommendations, and to be tangible to support uptake and implementation at both a
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national and state/territory level, frequently in partnership. The outcome of our analysis bore three priority areas for advocacy. The first aimed to improve access to meaningful, effective and comparable ‘data’, providing essential information for quality improvement activities. This coupled with regular monitoring and benchmarking, can provide a mechanism for identifying continuous improvement. The second advocacy priority area identified, was the need for a national standardised approach to ‘policy’ for secondary prevention and heart failure management, together with sustainable funding and clear referral pathways, to guide progress on policy at all levels. The final advocacy priority, ‘people’, identified the need for a workforce that has the capacity and capability to embed secondary prevention and heart failure management as standard components of care. Also, across all advocacy priorities a consumer focus is vital to ensure 17
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raised awareness of the importance of seeking and attending cardiac rehabilitation and setting expectations for care. Although cardiac rehabilitation and heart failure are clinically
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disparate, our findings identified that advocacy asks for system change were broadly the same. Best-practice management of heart disease, through evidence-based multidisciplinary
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patient-centred care across the disease continuum, can be realised if system-level changes
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are achieved.
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REFERENCES[d2]
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1. Australian Bureau of Statistics. Causes of death 2011 (Cat. no. 3303.0). Canberra: Australian Bureau of Statistics, 2013. 2. National Heart Foundation of Australia. A systematic approach to chronic heart failure: a consensus statement. Melbourne: National Heart Foundation of Australia, 2013. 3. National Heart Foundation of Australia. Secondary prevention of cardiovascular disease: a call for action to improve the health of Australians. Melbourne: National Heart Foundation of Australia, 2010. 4. Deloitte Access Economics. ACS in Perspective: The importance of secondary prevention. http://www.deloitte.com/assets/DcomAustralia/Local%20Assets/Documents/Industries/Government%20Services/Public%20Sector/Deloitt e_Acute_coronary_syndrome_Nov2011.pdf (accessed 14 March 2013). 5. National Heart Foundation of Australia. Improving the delivery of cardiac rehabilitation in Australia: The Heart Foundation Cardiac Rehabilitation Advocacy Strategy. Melbourne: National Heart Foundation of Australia, 2014. 6. Whalley B, Rees K, Davies P, et al. Psychological interventions for coronary heart disease. The Cochrane database of systematic reviews 2011; (8): CD002902. 7. Sundararajan V, Bunker SJ, Begg S, Marshall R, McBurney H. Attendance rates and outcomes of cardiac rehabilitation in Victoria, 1998. The Medical Journal of Australia 2004; 180(6): 268-71. 8. Yohannes AM, Doherty P, Bundy C, Yalfani A. The long-term benefits of cardiac rehabilitation on depression, anxiety, physical activity and quality of life. Journal of Clinical Nursing 2010; 19(1920): 2806-13. 9. Redfern J, Hyun K, Chew DP, et al. Prescription of secondary prevention medications, lifestyle advice, and referral to rehabilitation among acute coronary syndrome inpatients: results from a large prospective audit in Australia and New Zealand. Heart 2014; 100(16): 1281-8. 10. National Health and Medical Research Council. Strengthening Cardiac Rehabilitation and Secondary Prevention for Aboriginal and Torres Strait Islander Peoples: A Guide for Health Professionals. Canberra: Australian Government 2005. 11. Bunker S, McBurney H, Cox H, Jelinek M. Identifying participation rates at outpatient cardiac rehabilitation programs in Victoria, Australia. Journal of Cardiopulmonary Rehabilitation 1999; 19(6): 334-8. 12. Driscoll A, Tonkin A, Stewart A, et al. Development of an evidence-based scoring system (HFIS) to assess the quality of heart failure programmes for patients postdischarge from hospital. Journal of Clinical Nursing 2011; 20(21-22): 3011-9. 13. Chow CK, Redfern J. Secondary prevention of coronary heart disease in Australia: a blueprint for reform. The Medical Journal of Australia 2013; 198(2): 70-1. 14. Cohen D, de la Vega R, Watson G. Advocacy for social justice: A global action and reflection guide. Bloomfield: Kumarian Press, 2001. 15. World Health Organization. Stop the epidemic of chronic disease: A practical guide to successful advocacy. http://www.who.int/chp/advocacy/chp.manual.EN-webfinal.pdf, (accessed September 4, 2014). 16. NHS Institute for Innovation and Improvement. Quality and Service Improvement Tools: Cause and Effect (Fishbone). http://www.institute.nhs.uk/quality_and_service_improvement_tools/quality_and_service_improve ment_tools/cause_and_effect.html# (accessed September 4 2014). 17. National Heart Foundation of Australia. Reducing risk in heart disease: a guide. Melbourne: National Heart Foundation of Australia 2012. 19
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18. World Health Organization. Quality of care: a process for making strategic choices in health systems. Geneva: WHO, 2006. 19. Chew DP, French J, Briffa TG, et al. Acute coronary syndrome care across Australia and New Zealand: the SNAPSHOT ACS study. The Medical Journal of Australia 2013; 199(3): 185-91. 20. Health Innovation and Reform Council. Readmissions – Improving health failure outcomes (factsheet). Melbourne: State Government Victoria, 2013. 21. Stewart S, Horowitz JD. Home-based intervention in congestive heart failure: long-term implications on readmission and survival. Circulation 2002; 105(24): 2861-6. 22. Stewart S, Carrington MJ, Marwick TH, et al. Impact of home versus clinic-based management of chronic heart failure: the WHICH? (Which Heart Failure Intervention Is Most CostEffective & Consumer Friendly in Reducing Hospital Care) multicenter, randomized trial. Journal of the American College of Cardiology 2012; 60(14): 1239-48. 23. Australian Commission on Safety and Quality in Health Care. Consultation draft: Clinical Care Standard for Acute Coronary Syndrome. Sydney: Commonwealth of Australia, 2013. 24. Clark RA, Conway A, Poulsen V, Keech W, Tirimacco R, Tideman P. Alternative models of cardiac rehabilitation: a systematic review. European Journal of Preventive Cardiology 2013. 25. Brieger DB, Redfern J. Contemporary themes in acute coronary syndrome management: from acute illness to secondary prevention. The Medical journal of Australia 2013; 199(3): 174-8. 26. Clark AM, Redfern J, Briffa T. Cardiac rehabilitation: fit to face the future? Heart 2014; 100(5): 355-6. 27. National Heart Foundation of Australia. A toolkit for health professionals: Improving cardiac rehabilitationand heart failure services. 2014. http://www.heartfoundation.org.au/SiteCollectionDocuments/HF-ToolKit-Booklet.pdf (accessed 4 September 2014).
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S1443-9506(15)00075-X http://dx.doi.org/doi:10.1016/j.hlc.2015.02.002 HLC 1792
To appear in: Received date: Revised date: Accepted date:
10-9-2014 14-1-2015 5-2-2015
Please cite this article as: Stewart M, Page K, de Jong R, Lee R, Grenfell R, Secondary Prevention: The Heart Foundation’s Experience in Driving Change through Advocacy, Heart, Lung and Circulation (2015), http://dx.doi.org/10.1016/j.hlc.2015.02.002 This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
Secondary Prevention HLC Publication 9 September 2014 Revised 10 November 2014 Revised 13 January 2015
Secondary Prevention: The Heart Foundation’s Experience in Driving Change through Advocacy.
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Running Head: Secondary Prevention Advocating for change
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Authors:
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1. Michelle Stewart, BHthSc1 2. Karen Page, DN2 3. Rachael de Jong, MPH3
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4. Rebecca Lee, MPH4 5. Robert Grenfell, MD, FAFPHM5
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Institution and Affiliations:
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1. National Heart Foundation of Australia, National Manager, Acute Coronary
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Syndromes
2. National Heart Foundation of Australia, National Manager, Health Equity and
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Secondary Prevention; Adjunct Professor, Deakin University. 3. National Heart Foundation of Australia, National Policy Officer, Cardiovascular Health 4. National Heart Foundation of Australia, National Project Officer, Health Equity and Secondary Prevention
5. National Heart Foundation of Australia, National Director, Cardiovascular Health
Corresponding Author: Dr Karen Page
Level 12 500 Collins Street Melbourne Vic 3000
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Ph: 03 9321 1570 [email protected]
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Abstract (200 words)
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Introduction
Heart disease is the leading single cause of death for men and women in Australia. There
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are 685,000 people living with heart disease, approximately 50% will be experiencing signs and symptoms of heart failure. This article aims to articulate the key advocacy activities
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required to improve the provision of evidence-based secondary prevention including cardiac
M
rehabilitation and multidisciplinary chronic heart failure management services. Method
d
The Heart Foundation undertook an extensive consultation process with many experts,
te
policy makers, health and public health professionals through forums, evidence reviews and working groups. A range of actions are required to improve access to secondary prevention,
Ac ce p
but only those that the Heart Foundation could drive and support have been included. Results
The results identified three synergistic advocacy areas between heart failure and cardiac rehabilitation to drive secondary prevention advocacy. These were data, policy and people. Discussion
The priority actions are discrete and tangible to progress rather than revisit established evidence-based recommendations, and to support uptake and implementation at a national and state/territory level. We must consider the current landscape within which secondary
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prevention sits and identify the intersecting barriers and enablers that can be influenced. There is no single solution or lever for change.
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Conclusion Best-practice management of heart disease can be achieved through a co-ordinated effort to
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implement system change. Focus should be paid to a multi-faceted approach in the key
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advocacy areas identified here – data, policy and people – as these will provide benefit across the disease continuum, from secondary prevention and cardiac rehabilitation through
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to heart failure management. Keywords:
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Heart failure
Health care reform
Ac ce p
Health policy
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Secondary prevention
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Cardiac rehabilitation
Patient advocacy
Acknowledgements
National Heart Foundation of Australia Cardiac Rehabilitation Advocacy Strategy Expert Working Group
National Heart Foundation of Australia Chronic Heart Failure Systems of Care Expert Working Group System of care for chronic heart failure expert roundtable members Disclosures
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The Heart Foundation did not receive any funding to complete this work.
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INTRODUCTION Heart disease is the leading single cause of death for men and women in Australia. Every 15
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minutes someone experiences a myocardial infarction equating to 55,000 Australians a year1; there are 685,000 people living with heart disease, approximately 50% will also be
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experiencing signs and symptoms of heart failure2, 3. In 2010, there were 25,773 hospital separations recorded due to repeat acute coronary syndrome (ACS) events and this is
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expected to rise to 34,519 by 20204. The direct cost of these repeat events to the Australian health care system is estimated to be $613 million and the indirect costs are estimated at
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$96 million due to loss of productivity and economic efficiencies4 . Overall, in Australia, the financial cost of all ACS events in 2010 was estimated to be nearly $5.1 billion, with repeat
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events accounting for approximately one third of this cost4 .
The majority of individuals experiencing ACS and/or heart failure are eligible for a referral to
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a secondary prevention program. Examples of evidence-based secondary prevention
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management services5.
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strategies for heart disease include cardiac rehabilitation services and multidisciplinary CHF
These programs can vary in content, delivery mode and setting depending on whether they are addressing risk factor modification following an ACS event or ongoing management of heart failure. However, at an individual and population level the benefits of these programs are well established and include improved quality of life6, and reductions in morbidity, mortality and hospital admissions7, 8 Despite these well established benefits program attendance is poor. In Australia, participation rates can be as low as 25%9; Aboriginal and Torres Strait Islander peoples are less likely to participate than non-Indigenous Australians, despite being twice as likely to die from heart disease 10.
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The barriers associated with poor attendance have been extensively documented11 and across Australia there is growing momentum for system reform. Systematic change is
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important to achieve consistency of quality service delivery regardless of a patient’s status or location. Across ACS and heart failure there are many apparent indicators of non–guideline based management, poor coordination and communication, and recurrent hospital
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admissions12. Reform across secondary prevention to address these gaps remains a
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pressing concern. In 2009, the Heart Foundation undertook an extensive consultative process to inform a policy paper entitled ‘Secondary Prevention of Cardiovascular Disease:
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a call to action to improve the health of Australians’ 3. This paper outlined key action areas to improve the provision of secondary prevention. More recently in 2013, The George Institute
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Summit Blueprint for Reform for secondary prevention13 and the Heart Foundation’s Consensus Statement A Systematic Approach to Chronic Heart Failure Care: a Consensus
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Statement identified similar themes. These policy documents articulate the evidence-based
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practices necessary to influence system change and improve care delivery. Advocacy is one of the main tools that the Heart Foundation undertakes to achieve system
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change at national and local levels. Advocacy can be thought of as “the pursuit of influencing outcomes – including public policy and resource allocation decisions within political, economic, and social systems and institutions – that directly affect people’s lives” 14. Sometimes known as ‘the art of persuasion’, advocacy is simply the process of influencing people to create change. Its lifeblood is good strategic communications, educating people about a need and mobilising them to meet it 15.The purpose of this paper is to articulate advocacy strategies identified to achieve improvements to the provision of secondary prevention care and care delivery in Australia. This article acknowledges that cardiac rehabilitation and heart failure are separate and different entities on the secondary prevention care continuum. Both of these areas are supported by separate clinical practice guidelines and have many similarities but also unique differences in care and care delivery. 8
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Despite these differences, the issues and advocacy activities at a National, State and Territory level share many parallels, which this paper will articulate.
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METHODS Complex systems mapping, also referred to as a fishbone analysis, is a form of root cause
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analysis and is increasingly being used to inform quality initiatives in health 16. Complex
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Systems Analysis requires agreement on a problem statement (effect), in this case a lack of system refinement to improve secondary prevention care. The causes of the problem
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provide the branches and indicate causal relationships. 16
In 2013, several brainstorming sessions were held with a strategic group of key individuals
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across the Heart Foundation to undertake a Complex Systems Analysis for secondary prevention which identified the major causes of the problem. The key individuals included
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the Director of Cardiovascular Health, the Chief Medical Advisor, Secondary Prevention
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Managers, Government Relations staff, and secondary prevention working group members. As this was an internal piece of work for the Heart Foundation participants were recruited
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internally from the organisation. All participants were aware of the key secondary prevention documents 13
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. Participants were then requested to identify advocacy priorities that could
assist to address these causes.
RESULTS
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Figure One: Complex Systems Mapping – Secondary Prevention & Heart Failure.
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The Complex Systems Analysis (Figure One) undertaken for secondary prevention and heart failure identified three key advocacy areas for quality improvement activities: data,
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policy and people. The first advocacy area ‘access to meaningful data’ will allow for measurement and benchmarking of health care activities identifying gaps and strengths to drive quality improvement, while also supporting quality research. The second advocacy area of ‘policy’ identifies strong need for a national standardised approach to both secondary prevention and heart failure care, coupled with sustainable funding and strong referral pathways for all patients. The third advocacy area of ‘people’ identifies the need for a strong workforce with the capacity and capability to support secondary prevention and heart failure patients as well as ensuring consumers are aware of the services and care available to them.
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Box One: Secondary Prevention Advocacy Priorities Data: Access to meaningful quality data for benchmarking and service provision including a
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set of national indicators and standards for secondary prevention care to evaluate, inform and improve the systems of care 3, 5.
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Policies: ACS Clinical Care Standard (under development) to incorporate a quality
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statement addressing secondary prevention as a standard component of the acute episode of care.
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People: Engage all levels of health professionals and consumers to support the promotion of secondary prevention services as a critical component of care.
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Data
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As identified in Figure One, access to meaningful, effective and comparable data was seen as essential for informing quality improvement activities at all levels including government,
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clinical, research and individual 2, 3. Data and monitoring were viewed as providing a
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mechanism for identifying improvement through benchmarking. Based on this, an advocacy priority for ‘data’ was developed (Box One). Policies
A major stumbling block towards integrated secondary prevention in the patient journey for all people with cardiovascular disease was perceived to be the lack of Federal Government policy. A national standardised approach to secondary prevention and heart failure management, coupled with clear sustainable funding and clear referral pathways, as indicated by Figure One, would inform the standard of care required. The standard will be provided irrespective of patient’s location, as well as supporting locally initiated policies at both a state government and health service level. In addition, there was a recognised need 11
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for funding policies to address the demand for the sustainable funding models. Based on this, an advocacy priority for ‘policies’ was developed (Box One).
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People The ‘people’ arm of the Complex System Analysis (Figure One) identifies the need for a
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workforce that has the capacity and capability to embed secondary prevention and heart
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failure management as a standard component of care. From a consumer perspective, awareness needs to emphasise the importance of seeking and attending cardiac
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rehabilitation to reduce the risk of subsequent cardiac events and the potential advance to heart failure. Patients also need to be made aware of care practices for their condition no
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matter where they are on their secondary prevention journey. Based on this, an advocacy priority for ‘people’ was developed (Box One).
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DISCUSSION
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Advocacy has no prescribed or clearly determined method but involves finding the best combination of strategies to further the cause. In this instance, the aims of the advocacy
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strategies were to inform the policy and associated system changes required to support delivery of evidence-based care, as well as to assist health departments, health network administrators, clinicians and consumers in improving care systems for people living with heart disease. The intended audiences were policymakers, health system managers, consumers, and health professionals across acute and primary care, including cardiologists, general practitioners, nurses, dietitians and other members of the multidisciplinary team. Data (Box One) Access to meaningful, effective and comparable data is essential for informing quality improvement activities at all levels including government, clinical and individual 2, 3. Data and its monitoring provide the means to identify health service delivery gaps, strengths, 12
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weaknesses and areas for improvement 2. Quality data enables improvement initiatives to be evaluated and provides the ability to identify adverse events 2, 3. Data “ … is fundamental
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because any quality improvement is dependent on the capacity to measure change in processes and outcomes, and on stakeholders having access to the information that
determining the effectiveness and cost of individual treatment2.
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changes what they do”18. The collection of outcomes data is the only accurate way of
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SNAPSHOT ACS collected the most recent data for the provision of cardiac services in Australia. This two-week audit (undertaken in May 2012) collected data on the care and
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outcomes among patients with suspected and diagnosed ACS from more than 470 hospitals across Australia and New Zealand19. This audit identified significant variations in care and
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will inform future monitoring and benchmarking of cardiac care improvements. Further analysis of the secondary prevention component of the data found that only 27% of patients
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with ACS received optimal in-hospital preventive care9. ‘Optimal care’ means receiving
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lifestyle advice (exercise or diet advice or smoking advice for current smokers), referral to cardiac rehabilitation and prescription of secondary prevention drugs (four out of five
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medications)9. Patients admitted to hospital for an ST-elevation myocardial infarction (STEMI), non ST-elevation myocardial infarction (NSTEMI), percutaneous coronary intervention (PCI), coronary artery bypass grafts (CABG) or who had history of hypertension were more likely to receive optimal preventive care9. Older patients (>70yrs) and patients admitted to private hospital were less likely to receive optimal care9. Recently, the Victorian Government has identified heart failure as a priority area. It is one of the top three index admission diagnostic related groups (DRG) associated with the greatest bed day utilisation for unplanned readmissions in Victoria20. It is estimated that in the state there are approximately 100,000 people living with heart failure and for all diagnosed cases, there is one undiagnosed case20. A simple chronic heart failure admission (DRG 62B) costs 13
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approximately $3440 while a more complex admission (DRG 62A) costs $7260. Based on an estimate of 2000 readmissions per year, the annual cost of hospitals stays ranges from
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$6.8 to 14.5 million for the state2. In response to this growing problem, the Victorian Government, led by the Health Innovation
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and Reform Council (HIRC), has proposed a project with the specific aim of developing a whole-of-system understanding of barriers and enablers to improve outcomes for people
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with heart failure20. This project will focus on understanding system performance for readmissions for heart failure, provide clinician and health service performance information,
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identify care variation, and support implementation of evidence-based care20.
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Across Australia, no state or territory except South Australia collects a minimum data set for either cardiac rehabilitation or heart failure across the acute or primary care settings. However, the Queensland Government has incorporated some core data collection and
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monitoring components into their heart failure state plan currently in development20.
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Presently, there has been no commitment to the development of national data definitions or
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standardised health outcome measures for secondary prevention to evaluate the effectiveness of care systems 2. The Heart Foundation has proposed a health outcome measure of “12-month event-free survival” for those presenting to hospital with heart failure21; an event is defined as an emergency presentation, hospitalisation and premature death22. This outcome will be used to measure care effectiveness and provide a benchmark for Australia for comparison with international data2. Policies (Box One) A Clinical Care Standard provides a small number of quality statements that describe the clinical care that a patient should be offered for a specific clinical condition. It has the potential to reduce unwarranted care variation, which cannot be explained by the clinical 14
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circumstances or personal choices of the patient. It has been identified that unwarranted variation in care occurs when there is: a gap between what we know of the evidence and the
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actual care delivered - either misuse (or errors) doing something incorrectly and harming people; overuse of treatments or procedures that have no recognised benefit; and opposing
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underuse of treatments that provide benefit23.
The Heart Foundation has undertaken significant advocacy work to support the formulation
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of the ACS Clinical Care Standard (ACS CCS), under the leadership of the Australian Commission on Safety and Quality in Health Care (ACSQHC). The ACS CCS will provide a
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small number of quality statements that describe the clinical care that a patient should be offered for ACS and includes a secondary prevention quality statement23. Recently released,
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the inclusion of this statement will embed the provision of secondary prevention strategies as a standard component of the acute episode of care, including referral to cardiac
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rehabilitation throughout Australia24.
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Overall, the standard will support people receiving care by providing an expectation of what
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to anticipate from their health care system. Health care professionals will receive evidencebased information to guide decisions about appropriate care and enable health care services to examine the performance of their organisation and make improvements in the care they provide. The standard will also provide a tool for measuring the impact of quality improvement activities and to identify adverse events or medical errors caused by inadequate information 2, 3. People (Box One) Effective secondary prevention requires the coordination of a multidisciplinary team across clinical settings. This team approach supports better patient outcomes. Unfortunately, there is a lack of recognition by clinicians of the gaps in secondary prevention strategies25 and 15
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scepticism over their benefits 26. With the evolution of the generalised chronic disease care model and limited resources, the emphasis on specialised secondary prevention services is being diluted. However, with an ageing population there is an increasing need for a
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specialised, multidisciplinary chronic disease workforce2. This includes supporting
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collaborative models of care that integrate services from hospital to community 26.The health workforce is in an influential position to be the voice for patients and steer system change to
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improve services. Given the importance of this work, activation of these priorities has already commenced.
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In Victoria, a number of pilot initiatives identified that delivery of in-hospital patient information (Phase One Cardiac Rehabilitation) is often fragmented, highly variable, and in
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some cases, absent. A resource is being developed which will facilitate effective patient engagement by providing a six-step guide for nurses on the key information that should be
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given to patients prior to hospital discharge. The resource will be presented as a checklist
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that can be embedded into hospital systems, building understanding and confidence about the Phase One information required. This reinforces the critical role hospital nurses have in
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initiating measures for secondary prevention including referral to cardiac rehabilitation and risk factor modification.
In Queensland, a clinical engagement toolkit to improve cardiac rehabilitation and heart failure services has been developed by the Heart Foundation and distributed to health professionals and health administrators across the state27. The toolkit provides recommendations to support clinicians in becoming advocates for cardiac rehabilitation and heart failure services in Queensland. It was developed in response to the increasing threat to these specialised services due to a number of health reform initiatives that do not deem them as essential frontline services. LIMITATIONS 16
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The principal objective of this strategy was to define the Heart Foundation’s role in improving service provision. As such, only actions that could and should be driven by the Heart
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Foundation were included. There is obviously a range of other actions that are required to improve cardiac secondary prevention services, but these were considered out of scope and
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are therefore not included.
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CONCLUSIONS[rl1]
From the outset, it was acknowledged that to improve the provision of secondary prevention, in Australia, there is not a single solution or lever for change. We must consider the current
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landscape within which secondary prevention sits and identify the intersecting barriers and
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enablers that can be influenced.
The aim of this approach was to clearly articulate the problem and the associated causes
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with the appropriate advocacy ask to ameliorate their impact. The priority advocacy actions
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were crafted to be discrete, to progress rather then revisit established evidence-based recommendations, and to be tangible to support uptake and implementation at both a
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national and state/territory level, frequently in partnership. The outcome of our analysis bore three priority areas for advocacy. The first aimed to improve access to meaningful, effective and comparable ‘data’, providing essential information for quality improvement activities. This coupled with regular monitoring and benchmarking, can provide a mechanism for identifying continuous improvement. The second advocacy priority area identified, was the need for a national standardised approach to ‘policy’ for secondary prevention and heart failure management, together with sustainable funding and clear referral pathways, to guide progress on policy at all levels. The final advocacy priority, ‘people’, identified the need for a workforce that has the capacity and capability to embed secondary prevention and heart failure management as standard components of care. Also, across all advocacy priorities a consumer focus is vital to ensure 17
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raised awareness of the importance of seeking and attending cardiac rehabilitation and setting expectations for care. Although cardiac rehabilitation and heart failure are clinically
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disparate, our findings identified that advocacy asks for system change were broadly the same. Best-practice management of heart disease, through evidence-based multidisciplinary
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patient-centred care across the disease continuum, can be realised if system-level changes
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are achieved.
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REFERENCES[d2]
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1. Australian Bureau of Statistics. Causes of death 2011 (Cat. no. 3303.0). Canberra: Australian Bureau of Statistics, 2013. 2. National Heart Foundation of Australia. A systematic approach to chronic heart failure: a consensus statement. Melbourne: National Heart Foundation of Australia, 2013. 3. National Heart Foundation of Australia. Secondary prevention of cardiovascular disease: a call for action to improve the health of Australians. Melbourne: National Heart Foundation of Australia, 2010. 4. Deloitte Access Economics. ACS in Perspective: The importance of secondary prevention. http://www.deloitte.com/assets/DcomAustralia/Local%20Assets/Documents/Industries/Government%20Services/Public%20Sector/Deloitt e_Acute_coronary_syndrome_Nov2011.pdf (accessed 14 March 2013). 5. National Heart Foundation of Australia. Improving the delivery of cardiac rehabilitation in Australia: The Heart Foundation Cardiac Rehabilitation Advocacy Strategy. Melbourne: National Heart Foundation of Australia, 2014. 6. Whalley B, Rees K, Davies P, et al. Psychological interventions for coronary heart disease. The Cochrane database of systematic reviews 2011; (8): CD002902. 7. Sundararajan V, Bunker SJ, Begg S, Marshall R, McBurney H. Attendance rates and outcomes of cardiac rehabilitation in Victoria, 1998. The Medical Journal of Australia 2004; 180(6): 268-71. 8. Yohannes AM, Doherty P, Bundy C, Yalfani A. The long-term benefits of cardiac rehabilitation on depression, anxiety, physical activity and quality of life. Journal of Clinical Nursing 2010; 19(1920): 2806-13. 9. Redfern J, Hyun K, Chew DP, et al. Prescription of secondary prevention medications, lifestyle advice, and referral to rehabilitation among acute coronary syndrome inpatients: results from a large prospective audit in Australia and New Zealand. Heart 2014; 100(16): 1281-8. 10. National Health and Medical Research Council. Strengthening Cardiac Rehabilitation and Secondary Prevention for Aboriginal and Torres Strait Islander Peoples: A Guide for Health Professionals. Canberra: Australian Government 2005. 11. Bunker S, McBurney H, Cox H, Jelinek M. Identifying participation rates at outpatient cardiac rehabilitation programs in Victoria, Australia. Journal of Cardiopulmonary Rehabilitation 1999; 19(6): 334-8. 12. Driscoll A, Tonkin A, Stewart A, et al. Development of an evidence-based scoring system (HFIS) to assess the quality of heart failure programmes for patients postdischarge from hospital. Journal of Clinical Nursing 2011; 20(21-22): 3011-9. 13. Chow CK, Redfern J. Secondary prevention of coronary heart disease in Australia: a blueprint for reform. The Medical Journal of Australia 2013; 198(2): 70-1. 14. Cohen D, de la Vega R, Watson G. Advocacy for social justice: A global action and reflection guide. Bloomfield: Kumarian Press, 2001. 15. World Health Organization. Stop the epidemic of chronic disease: A practical guide to successful advocacy. http://www.who.int/chp/advocacy/chp.manual.EN-webfinal.pdf, (accessed September 4, 2014). 16. NHS Institute for Innovation and Improvement. Quality and Service Improvement Tools: Cause and Effect (Fishbone). http://www.institute.nhs.uk/quality_and_service_improvement_tools/quality_and_service_improve ment_tools/cause_and_effect.html# (accessed September 4 2014). 17. National Heart Foundation of Australia. Reducing risk in heart disease: a guide. Melbourne: National Heart Foundation of Australia 2012. 19
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18. World Health Organization. Quality of care: a process for making strategic choices in health systems. Geneva: WHO, 2006. 19. Chew DP, French J, Briffa TG, et al. Acute coronary syndrome care across Australia and New Zealand: the SNAPSHOT ACS study. The Medical Journal of Australia 2013; 199(3): 185-91. 20. Health Innovation and Reform Council. Readmissions – Improving health failure outcomes (factsheet). Melbourne: State Government Victoria, 2013. 21. Stewart S, Horowitz JD. Home-based intervention in congestive heart failure: long-term implications on readmission and survival. Circulation 2002; 105(24): 2861-6. 22. Stewart S, Carrington MJ, Marwick TH, et al. Impact of home versus clinic-based management of chronic heart failure: the WHICH? (Which Heart Failure Intervention Is Most CostEffective & Consumer Friendly in Reducing Hospital Care) multicenter, randomized trial. Journal of the American College of Cardiology 2012; 60(14): 1239-48. 23. Australian Commission on Safety and Quality in Health Care. Consultation draft: Clinical Care Standard for Acute Coronary Syndrome. Sydney: Commonwealth of Australia, 2013. 24. Clark RA, Conway A, Poulsen V, Keech W, Tirimacco R, Tideman P. Alternative models of cardiac rehabilitation: a systematic review. European Journal of Preventive Cardiology 2013. 25. Brieger DB, Redfern J. Contemporary themes in acute coronary syndrome management: from acute illness to secondary prevention. The Medical journal of Australia 2013; 199(3): 174-8. 26. Clark AM, Redfern J, Briffa T. Cardiac rehabilitation: fit to face the future? Heart 2014; 100(5): 355-6. 27. National Heart Foundation of Australia. A toolkit for health professionals: Improving cardiac rehabilitationand heart failure services. 2014. http://www.heartfoundation.org.au/SiteCollectionDocuments/HF-ToolKit-Booklet.pdf (accessed 4 September 2014).
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