Health Policy. Findings: Optimising prevention and the management of care for Australians with serious and continuing chronic illness

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1 Menzies Centre for Health Policy Findings: Optimising prevention and the management of care for Australians with serious and continuing chronic illness May 2012

2 The Serious and Continuing Illness Policy and Practice Study The 2012 Aged Care Reform Package has recognised the need to provide better services to help people remain in their own home cared for with the help of good quality, affordable health and community services. The Menzies Centre for Health Policy s Serious and Continuing Illness Policy and Practice Study (SCIPPS) examined the experiences of older Australians to find out what problems they really face in managing their health, and what might be done to help using policy and systems interventions. Health professionals and people affected by chronic conditions as patients and carers- and many people are bothtook part. Indigenous people and people from diverse cultural and language backgrounds were included in the study. An in depth study of a collaboration to improve chronic condition outcomes was conducted in Western Sydney. We carried out two national surveys of older Australians to establish the economic and other costs of chronic conditions, and the time spent on health care with a chronic condition, as well as how well care coordination works on the ground. The main findings of the research program show that: People are affected by the costs of health care and medicines to the point where many avoid filling prescriptions or attending services; we estimate that around 250,000 older Australians are spending more than 20% of their available income on meeting out of pocket health care costs; Carers need help so they can help their family members who need them: they need help understanding what to do, when to do it, and where to find more formal help; of all older people caring for a person with a chronic condition, most have a chronic condition themselves; Indigenous people with chronic conditions find great support in their families and culture and the holistic support they receive in aboriginal medical service, which contrasts with their continued perception of racism in mainstream services; People with multiple chronic conditions find that the lack of communication and connection between people who are responsible for their care causes problems, delays, and unnecessary time spent on getting care; Most people spend less than an hour a day looking after their health, but the top 10% spends about 2 hours a day- every day; and carers with a chronic condition themselves are spending up to four times that amount; The unique element in highly diverse patterns of illness and health services use is the patient experience, and to ensure that the best use of resources and best outcomes are possible, this needs to be reflected in new policies and practices. SCIPPS set up discussions with policy makers, practitioners, consumer groups and researchers to look at three areas of findings that were complex, and difficult to address from a policy and systems perspective; the complexities associated with multiple morbidity; the economic impact of chronic illness; and health literacy of individuals and their communities. From these workshops, further dialogue with a range of stakeholders, consumers, researchers, public and private providers and policy makers identified potentially useful approaches to address issues brought up as part of the research, which are in the attached report. The value of the SCIPPS project is its foundation in user experience and the developing dialogue with a range of groups and people with both interest and expertise in an area that is both complex and increasingly costly. Stephen Leeder Bob Wells 1

3 SCIPPS Final Conference Report CONTENTS 1 Introduction The Menzies Centre for Health Policy SCIPPS Purpose of the Conference 3 2 SCIPPS Research Findings Presentations Discussion 4 3 Future Options Presentations Discussion 5 4 Agreed Directions Strategies and Approaches Further Research 7 5 Attachments List of Invited Participants 9 2

4 1. Introduction 1.1 THE MENZIES CENTRE FOR HEALTH POLICY The Menzies Centre for Health Policy is a joint centre of the Australian National University and the University of Sydney and was established in 2006 from a competitive grant through the Sir Robert Menzies Memorial Foundation. The Centre focuses on research, analysis, advice and education that influences health policy and practice in Australia and elsewhere. The Centre s activities are underpinned by four themes: Futures policies for prevention, a sustainable and efficient health system and workforce Equity policies for equal access to equal care for equal need Serious and continuing illness - policies that meet the challenges of prevention and minimise the burden of chronic illness Governance - policies for systems that achieve equity, quality, efficiency and accountability. 1.2 SCIPPS The Serious and Continuing Illness Policy and Practice Study (SCIPPS) is a five-year NHMRC-funded research program that seeks to identify systems and policy interventions that will improve outcomes, based on the lived experience of people with chronic diseases. Key elements of the study included: the collection of data from Australian community residents with chronic heart failure, complicated Type II Diabetes Mellitus and chronic obstructive pulmonary disease dissemination of research findings through publications, national and international conference presentations and workshops translation of the study findings into policy through activities such as roundtable discussions. 1.3 PURPOSE OF THE CONFERENCE The Centre convened the conference to enable stakeholders to review and discuss the study findings and to identify and consider options and strategies for translating these into policy. The conference was facilitated by Lynette Glendinning from Tempo Strategies and Douglas Smith prepared this Summary Report. 3

5 2. SCIPPS Research Findings 2.1 PRESENTATIONS The Centre Co-Directors, Professor Stephen Leeder (University of Sydney) and Mr Robert Wells (Australian National University) provided an overview of the research findings, which were also summarised in the conference papers and published papers included with the conference agenda. The findings point to consumer dissatisfaction with the systems of care and a disconnect between their needs and available care and support, particularly in relation to: social support structures such as transport and home care the cost of care in terms of time and expense. As the study identified that approximately 90% of care is provided outside the health system, there a range of policy levers and incentives across health, social and welfare systems that can improve outcomes for people with chronic diseases. 2.2 DISCUSSION Workshop table groups were invited to discuss the research findings and identify the key messages and implications of the research. The key themes identified by table groups are summarised below. Consumer Perspective The study provides an evidence base to validate consumers experiences, particularly in relation to the fragmented nature of health and social welfare system, the lack of coordination or incentives to join up services, the role of support structures and social services and the impact on consumers in relation to costs poverty is a reality for many people with chronic diseases. While it is possible for local level strategies to better connect and integrate services, it is more difficult in regional and rural areas, and it is not sustainable in the long term. In addition, the experience of consumers will depend on their capacity to navigate and use the system, and this is influenced by factors such as their health literacy, level of empowerment and capacity for advocacy, both for themselves and for practitioners (and against the system). Exemplars of services that successfully address the consumer experience, such as the Aboriginal Medical Services, are based on clear operating principles that focus on elements such as patient focus, a holistic approach, integration and cultural appropriateness. 4

6 Measurement Clear identification of the use of funds, and where funds are held and by whom, is seen as critical to ensuring coordinated, integrated health care provision. This includes measurement of both health and welfare services and costs and related factors such as education and employment outcomes, which is possible at the Local Government Area (LGA) level. System Level Issues The current system is not designed for managing concurrent multiple diseases, which is manifest in a number of system-level inadequacies, including: fragmentation of service provision between the acute / primary / community / aged care sectors funding models which are increasingly focused on acute care private-public split in service provision (which only the consumer can join up) inconsistent and inadequate access to care and services lack of leadership and governance of chronic disease management current models of practice that are not well equipped for managing chronic diseases there is a need for a new medical generalist model macro-level issues which are outside the health care system and which require influence at a broader level, such as the work of the Productivity Commission and the Social Inclusion Board. 3. Future Options 3.1 PRESENTATIONS Key learnings on recent policy approaches to providing care for people with chronic diseases were developed by Associate Professor Jacqueline Cumming (Victoria University of Wellington) and Dr Daniel Fox (Milbank Memorial Fund). These papers were presented by Professor Phillip Davies and Associate Professor Jim Gillespie and copies were disseminated to the workshop. 3.2 DISCUSSION Workshop table groups were invited to consider options for influencing policy, as suggested by the research findings, in relation to the following themes: 1 How to integrate across the system beyond health? 2 How to move the health system to focus on chronic disease? 3 What can be improved at the practice / local level? 4 How to empower individuals / consumers? 5 How to strengthen governance and leadership? 6 How to shift the balance of power? The key options identified by table groups are summarised as follows: 5

7 Integrating Across the System beyond health Options identified for further exploration included: embedding health impact in all policies through the routine use of health impact statements in policy proposals establishing a cross-sectoral Premiers Council on health utilising high level health and health economics expert advisory group(s) harnessing the lessons from the Closing the Gap initiatives developing an asset inventory of current approaches and lessons, and share information across jurisdictions to facilitate learning. Moving the Health System Focus National policies and strategies such as the National Health Strategy should include a focus on principles such as preventive health, patient-focused care and a charter of healthcare rights. Improving Care at the Practice / local Level A number of initiatives and improvements are already underway which provide opportunities for improving care, such as Medicare Locals, changes in the service mix and the use of ICT in healthcare, such CDMnet, telehealth and asynchronous (not networked) telehealth models etc. There is significant opportunity, however, to drive the effectiveness of local level initiatives such as Medicare Local with a greater focus on performance management and outcomes. Empowering Individuals and Consumers Options were suggested in relation to four key areas: promoting consumer choice to fundholders (in the selection of practice / care coordinator) shifting the focus to functionality and the required level of support pursuing consumer-driven research strengthening consumer advocacy organisations and securing high level sponsorship or advocacy for consumer choice. Strengthening Governance and Leadership There is a need to develop a shared vision, values and desired outcomes for care for people with chronic diseases, and to support this with transparency of measurement of performance and outcomes. There are already well-established principles and frameworks that can be harnessed to strengthen governance and leadership, such as the Quality and Safety framework. 6

8 Shifting the Balance of Power Information and evidence can be harnessed and leveraged, and with funding decisions (supported by data), be used to re-align and reallocate the focus of care. 4. Agreed Directions Workshop table groups were invited to identify directions either in relation to strategies and approaches or further research. 4.1 STRATEGIES AND APPROACHES Groups identified a number of key strategies and approaches for translating the research findings into policy, including: consolidating and building on existing local initiatives and programs, particularly by: fully embedding the approaches and principles in local communities refining the tools, such as planning tools and navigation tools harnessing and sharing lessons learned supporting Medicare Locals to achieve performance expectations and outcomes through strategies such as: sharing the lessons learned from successful Medicare Locals establishing sophisticated health outcome standards and measures (for example using the Canadian framework) that do not favour areas with advantaged populations providing for review and open competition (with an initial amnesty period) building public awareness of the health and socio-economic impacts for people with chronic diseases strengthening the focus on improving (and clarifying) health literacy and consumer empowerment at all levels through the health care system and on providing patient-focused care better utilising (and linking) data and information to build an evidence base utilising available high level policy levers such as the Productivity Commission Report on Aged Care, the Social Inclusion agenda, the roll-out of the National Broadband Network (NBN) and the proposed National Disability Insurance Scheme. 4.2 FURTHER RESEARCH Suggested areas for further research included: examining the equity of access to care, particularly for marginalised consumers to understand, from a consumer perspective, the problems and issues and their causes determining the feasibility of mixed and blended models of funding, including capitation, in terms of funding structures / arrangements, modelling, tools and benefits identifying the investment required to ensure that Medicare Locals successfully address the 7

9 needs of people with chronic diseases, in terms of the necessary infrastructure, capacity, technology and resources and the disinvestment required to achieve this identifying the most suitable implementation framework for Medicare Locals to achieve better outcomes for people with chronic diseases, including providing a stronger prevention focus and shifting care delivery from episodic care to programmatic interventions. 8

10 5. Attachments 5.1 LIST OF INVITED PARTICIPANTS Name Professor Robert Adams Diana Aspinall Dr Roshmeen Azam Professor Steven Boyages Dr Anne-marie Boxall Darlene Brooks Professor Gabrielle Cooper Louise Cowper Darlene Cox Professor Philip Davies Associate Professor Paul Dugdale Beverley Essue Naida Fletcher Associate Professor Jim Gillespie Dr Stan Goldstein Anna Greenwood Dr Paul Gross Associate Professor Stephen Jan Betty Johnson Tanisha Jowsey Lewis Kaplan Associate Professor Adrian Kay Shelley Kleinhans Professor Stephen Leeder Kate Lloyd Monique Machutta Franca Marine Lisa McGlynn Russell McGowan Peter McInnes Dr Justin McNab Jo Medlin Michael Moore Morag Morrison Dr Diana O Halloran Professor Mick Reid Organisation University of Adelaide Consumer Reference Group, Blue Mountains GP Network Medibank Health Solutions NSW Clinical Education and Training Institute Health Policy Research Institute Australian Healthcare and Hospitals Association Department of Health and Ageing University of Canberra Western Sydney Local Health District Health Care Consumers Association University of Queensland ACT Health The George Institute for Global Health Australian Practice Nurses Association Menzies Centre for Health Policy, University of Sydney Bupa Australia Consumers Health Forum of Australia Institute of Health Economics and Technology Assessment The George Institute for Global Health Health Consumers NSW Menzies Centre for Health Policy, Australian National University Diabetes Australia Crawford School, Australian National University Metro North Brisbane Medicare Local Menzies Centre for Health Policy, University of Sydney NSW Health Department of Health and Ageing Arthritis Australia Australian Institute of Health and Welfare Health Care Consumers Association Australian Primary Health Care Research Institute Menzies Centre for Health Policy, University of Sydney Western Sydney Local Health District Public Health Association of Australia Health Consumers NSW Wentwest-Western Sydney Medicare Local Consultant 9

11 Josephine Root Margo Saunders Patrick Tobin Robert Wells Laurann Yen Council on the Ageing Australia Public Health Policy Researcher / Consultant Catholic Health Australia Menzies Centre for Health Policy, Australian National University Menzies Centre for Health Policy, Australian National University 10

12 SCIPPS: Positioning chronic disease care and management in current health policy Background papers The policy context Roundtable 1 Report: Understanding the complexities of co-morbidity with respect to policy and practice Roundtable 2 Report: The economic impact of chronic disease on individuals and families Roundtable 3 Report: Health literacy for individuals and communities to support selfmanagement Published papers 11

13 Background The Serious and Continuing Illness Policy and Practice Study (SCIPPS) was developed jointly by the University of Sydney and the Australian National University branches of the Menzies Centre for Health Policy. This NH&MRC funded five-year research program sought to identify systems and policy interventions that would improve outcomes, based on an understanding of the lived experience of people with chronic illness. SCIPPS gathered data from Australian community residents with chronic heart failure, complicated Type II Diabetes Mellitus and chronic obstructive pulmonary disease. Eighty-seven percent of the combined group of patients and carers experienced comorbidity, a figure exceeding the 70% of older Australians known to have multiple chronic conditions. Translation of the study findings into policy continued in late 2011 through Roundtable discussions focusing on key themes that emerged from the research. Approximately 20 delegates attended each Roundtable. The three Roundtables were: Understanding the complexities of co-morbidity with respect to policy and practice, on Wednesday 16th November 2011 at the University of Sydney, The economic impact of chronic disease on individuals and families, on Tuesday 22nd November 2011 at the Australian National University, Canberra, and Health literacy for individuals and communities to support self-management, on Wednesday 30th November 2011 at the Australian National University, Canberra. The Roundtables generated a range of issues and problems that will be addressed at the March 2012 conference. The purpose of the conference will be to determine the most effective strategies by which SCIPPS research and Roundtable findings can be translated into policy. Context of the SCIPPS findings The Roundtables started from a common set of health policy problems: Multi-morbidity is a highly prevalent feature of chronic illness. Over 50% of Australians known to have chronic illness have in excess of five concurrent chronic illnesses. The severity and impact of chronic illnesses have a progressive nature. As people age, the number of chronic illnesses increase and the symptoms worsen, frequently reducing a person s functional ability. Increasing numbers of chronic illnesses are associated both with poorer self assessed health and with lower incomes. People with chronic illness experience their care as fragmented and poorly coordinated both between the different health sectors, and between health and other sectors. Points of intersection of the three Roundtables Despite each of the three Roundtables focusing on very different issues, some commonalities emerged: THE SCALE OF THE ISSUE 12 Multi-morbidity is far more common among people with chronic illness than is a single illness.

14 Multi-morbidity increases with age, increasing the likelihood of economic hardship in old age. The complexities of multi-morbidity have far-reaching impact on patients, their families, and carers. Multi-morbidity adds layers of complexity to clinical and self-management and can multiply the effects of the illnesses. The complexity of chronic illness requires a whole of system response. The views of professionals and of people with chronic illness about the problems associated with chronic illness, and the best ways to deal with them are not the same: addressing these differences and their implications is important in person-centred care. HEALTH LITERACY Health literacy is an asset that individuals bring to clinical encounters. It must also be seen as a social determinant of health: a collective asset that requires broader social supports from the health system and the community. The family and other informal carers need to be integrated into the caring and self-management process. Formal and informal carers need recognition in relevant policies. Health literacy is more than simple comprehension of the information given to a patient and their carers. Adequate health literacy requires the capacity to apply information into self-management and care. Health literacy requires health professionals to be aware of and take account of cultural difference. Health literacy includes confident engagement with the health system, essential for effective selfmanagement. Effective health literacy is built on strong links between patients, their families and broader communities. Health literacy also requires close collaboration and communication between the community and health systems. THE HEALTH AND WELFARE SYSTEMS The profile of the effects of chronic illness within the context of prevalence needs to be raised in order to influence changes in policy and practice. A whole of government approach is needed to create synergies that support chronic illness policy and practice across sectors, including public and private service provision. The issues relating to chronic illness management and self-management among Australia s rural and remote population receive inadequate attention. Rural and remote communities need models of care and well-being that enable access to health services and opportunities for health literacy exchange. WORKFORCE PARTICIPATION Chronic illness affects the whole household; people with chronic illness and their carers, and the majority of older carers themselves have at least one chronic illness. Household resources are often stretched beyond their capacity. There is, predictably, a strong relation between income levels and financial stress. Older 13

15 Australians have lower income levels at a time when the likelihood of greater medical and ancillary expenses due to chronic illness is greatest. OPPORTUNITIES IN A REFORM ENVIRONMENT Medicare Locals, Local Health Networks (or Districts) and Lead Clinicians Groups are well placed to implement the National Health Reform initiatives through collaborations between the health and community sectors. THE RESEARCH AGENDA A coordinated and cohesive research agenda is needed to develop a better understanding of the multiple aspects of the lived experience of multi-morbidity. The evidence base needs to be expanded, particularly from the perspective of those people living with multiple conditions. Research into mechanisms to achieve an effective feedback loop from evidence into policy to enable effective translation of knowledge needs to be identified as policy research in its own right. There are already many apparently successful attempts to devise solutions to these problems. These are usually localized, with little or no solid evaluation and little knowledge sharing of results. This is a major challenge for policy research. Full reports of each of the Roundtables can be found on the Menzies Centre for Health Policy website, at Although the focus of the roundtables differed, the problems facing people with chronic illness, particularly multi-morbidity are interrelated. The picture of multi-morbidity emerging from the Roundtables is deeply complex. Change is indicated in the health provider sector, but the more significant changes are to the infrastructure supporting many aspects of self-management. Non-government and government organisations need to improve coordination of services in order to help eliminate service duplication and service gaps. Close partnerships and collaborations, rather than directives and changes in responsibility that are perceived as cost-shifting and passing the buck, need to be developed between the health sector and the community. Facilitating these advances, changes to policy can lead to a more cohesive system that has the potential to deliver a multi-pronged, efficient, coordinated and timely response to the self-management needs of the patient, the family and the carers. Steering policy change The aim of SCIPPS was to improve the experience of living with chronic illness for patients, their families and carers. The SCIPPS findings and Roundtable outcomes provide a strong body of evidence to inform policy. SCIPPS and the Roundtable discussions have identified several areas of patient experience where policies are non-existent, patchy or conflicting. The findings have highlighted areas where people with multimorbidity and their family and carers are seriously disadvantaged through lack of co-ordination and collaboration in the systems from which they seek support in management of their conditions. Considerations for policy development and review have been identified through each of the three Roundtables (Appendices B, C and D). The complexities of policy development have been illustrated above. It is critical that strategies for conveying these considerations be developed to maximize the uptake of the findings among policy developers. Some of the key contributors to the identification of the policy evidence base are those people who 14

16 contributed to the Roundtable discussions, but others have yet to take their seat at the table. Our aim for the conference is to work out how policy might adopt and address these complex issues and improve the outcome for people with chronic illness and the communities that support them. 15

17 Conclusions from Roundtable 1 Understanding the complexities of co-morbidity with respect to policy and practice FUNCTIONAL LIMITATION The term functional deficit (both physical and cognitive) is preferable to chronicity - What can be done to develop programs of care that respond to increasing functional deficit which is a result of ageing and multiple morbidities or multiple conditions? FUNDING OF HEALTH SERVICES & REMUNERATION OF HEALTH CARE PROFESSIONALS Funding policy impacts significantly on provision of care and communication between health care professionals and drives change. The open-ended Commonwealth programs (Medical Benefits Scheme, Pharmaceutical Benefits Scheme) underwrite activities in the community space, but other components key to chronic disease management in the community space, namely nursing and allied health, are not underwritten by open-ended programs. The non-government organisation sector, which provides the non-clinical support to those with chronic disease, is also neglected. PRIMARY CARE & CARE IN THE COMMUNITY SPACE Reporting between services operating in the community space is frequently inadequate (eg: between community health and general practice, between private allied health providers and general practice) There is a need for the entire primary care sector to be connected. A vision for integrated primary care needs to be developed. Service planning for the care and management of people with chronic disease in the community space must be strategic, and should include development of a collaborative planning model. All of the relevant government agencies and key stakeholders as well as resource maps of and demographic detail would be needed for this. Enablers would have to be identified, and there would need to be strong and consistent reinforcement strategies until the benefits and outcomes for the individual with complex care needs are realized and become the norm. The many groups providing services in the community space - community health, NGOs, private providers, public providers - need to be more accountable for service provision and resource use in this space. There are two aspects to increasing accountability in this space: Creating a governance structure for primary care (which Medicare Locals are designed to do) and Funding and Responsibility/Authority to get the space working better with what they ve already got. Accessing services is a problem for patients. We need to be able to demonstrate to families and individuals that primary care will help with access and navigation via an integrated primary care service. The current health reforms do little to address the planning of service provision or funding difficulties faced by the community space in the care and management of individuals with chronic disease. 16

18 POPULATION PLANNING / SERVICE PLANNING A single government body should be responsible for the population planning/service planning for a geographical area, such as Western Sydney. This body would to be responsible for health, non-clinical support, aged care, disability, and can produce a population plan for chronic disease care and management in the area. A population based planning tool could be developed for out of hospital chronic disease care and management based on the demographics of the area and the models of care proposed. Service planning for the care and management of people with chronic disease in the community space must be strategic, and should include development of a collaborative planning model. All of the relevant government agencies and key stakeholders as well as resource maps of and demographic detail would be needed for this. Enablers would have to be identified, and there would need to be strong and consistent reinforcement strategies until the benefits and outcomes for the individual with complex care needs are realized and become the norm. Enrolment can be a planning/coordination tool. Discharge planning should be taken away from hospitals. PERFORMANCE INDICATORS The National Health Performance Authority is in the process of developing indicators for Medicare Locals and other health services. Every avoidable hospital admission should be seen as a failure of community care. Reducing avoidable hospital admissions should be part of chief executives key performance agreements. DATA & ENROLLING PATIENTS GPs don t routinely collect data on functional limitations; you need data before you can understand trends and formulate policy. Enrolment refers to the enrolment of patient with a particular service and happens currently in Australia (Aboriginal Medical Services and Aboriginal Community Controlled Services); enrolment also refers to linking the health information currently available for a particular person Medical Benefits Scheme, Pharmaceutical Benefits Scheme, general practitioners data, hospital medical records (outpatients, in-patients, emergency departments etc) and generating a personally controlled electronic health record. Enrolment can be a planning/coordination tool. The quality of the data is only as valuable as the entry of the data. The private health care industry was distressed when the Health Identifier Act for the development of the personally controlled electronic health record excluded access by private health insurers. Those associated with the Connecting Care Program have found that patients are not concerned about enrollment, but rather the services the patient is with are (including associated clinicians). POLY-PHARMACY Poly-pharmacy is a significant problem for people with co-morbid conditions and multi-morbidity. There is no mechanism for pharmacists to work in general practice currently; however, research in Queensland has found that having a pharmacist working in general practice had multiple positive 17

19 effects. RURAL & REMOTE The issues raised at this roundtable are amplified and more complex in rural and remote settings. Policy considerations There is an opportunity to shape the activities and outcomes of the Medicare Locals (MLs), in particular through the National Health Performance Authority. There is an opportunity to influence what services relating to chronic disease care and management in the community can be funded through the activity-based funding model of hospital networks through the Independent Pricing Authority. There is the need for the development of a population based planning tool for out of hospital chronic disease care and management based on the demographics of a population and the models of care proposed. There is the need for the development of a collaborative planning model for chronic disease care and management in the community. There is an opportunity to influence the placement of pharmacists in general practice or an integrated primary care context. The placement of most discharge planning with hospitals should be reconsidered. 18

20 Conclusions from Roundtable 2 The economic impact of chronic disease on individuals and families EXPENDITURE For some groups of patients and particularly for those with lower incomes, the increased expenditure associated with living with chronic illness/es can lead to economic hardship. The economic impact of chronic illness can adversely affect the affordability of medicines and other aspects of ongoing care. Preventive interventions can have far-reaching and long term benefits and decisions about whether to fund such interventions need to take these benefits into account. LEVELS OF ECONOMIC IMPACT Many carers and care recipients would, if they could, get a job (representative of a national carer s organisation). Chronic illness can affect carers, patients and households in their capacity to generate income at a time when a greater level of income is needed. The risk of economic hardship is greatest during the transition to retirement and in retirement where health care costs are likely to be rising and income is likely to be falling. Policy considerations OVERARCHING ISSUES The proposed National Disability Insurance Scheme represents a promising initiative to address the economic burden of disability on individuals and their families. Eligibility for various forms of support needs to take into account the specific needs associated with different diseases and the life stage of the patient. CARER ISSUES Government strategies need to reflect carers concerns. The impact of caring on the carer in terms of health, general wellbeing and economic welfare is insufficiently understood. A large number of carers also have disabilities. The carer s needs should be assessed separately to and severally from the needs of the care recipient, and in a timely manner. For optimum outcomes, carers need to be treated as partners in care, and given equal access to information, economic security and employment flexibility. Carers need to be included in family-directed support. Where children are the carers, students need to be able to combine ongoing education and other age-specific activities with their caring roles. 19

21 RETURN TO WORK ISSUES Carers have a right to request flexible employment. Current workforce and workplace design is a barrier to employment for carers and for care recipients who frequently need part-time and flexible working arrangements. Middle-aged and older carers who return to the workforce after an extended period of caring have particular needs for education and training. ENGAGEMENT STRATEGY Identify the problems and issues that have the biggest impact and the system they belong to. Determine which of these issues if changed will have the most significant impact on the system. Popularise the issue/s. Information out of the academic research, if effectively disseminated, can alert the community to the problem they didn t know existed. Raising the profile of the issues will put them into the public realm and start debate and provide the launching pad for action. 20

22 Conclusions from Roundtable 3 Health literacy for individuals and communities to support self-management CONCEPTS Often health literacy is not about health as we try to articulate it. Often it is about the friends we have and the connections we have in the community (representative of a national consumer organisation). Public and private health professionals and other service providers need to communicate effectively and efficiently in order to address the consumer s overall health needs. Health literacy is gender specific and occurs most effectively where people gather naturally in the community during everyday life. INFRASTRUCTURE The uptake by communities of existing successful models of health literacy can be maximised by enabling access to evaluation findings and data bases. Standardised health literacy messages are needed to provide a consistent message to the care recipient. Policy considerations OVERARCHING ISSUES The sharing of patient information across systems and sectors and between health and other service providers can minimise service duplication and service gaps. Medicare Local (ML) funding needs to be sufficient to support community engagement activities. Interventions need to target at risk groups whose connectedness with the community is reduced through chronic illness. Effective interventions need to be inclusive of family and others, gender specific and not illnessfocused. Consumer-focused approaches will enable consumers and their formal and informal carers to feel empowered, understood and heard. HEALTH LITERACY Discussions around health literacy will raise its profile and value to Australians. The language of health literacy needs to be part of the whole patient journey discourse and needs to be in terms of multi-morbidity. SELF-MANAGEMENT ISSUES Increased time spent on self-management reduces the time available for active citizenship that can lead to isolation. Measures of the consumer experience of services need to drive change. 21

23 A policy-driven framework or definition around self-management is needed to enable consumer monitoring of changing health literacy needs. A single care management plan is needed to incorporate all health requirements. Consumers with multi-morbidity, rural and remote-dwelling Australians, and those over the age of 65 years are advised to have an advocate for their health care needs. RURAL AND REMOTE COMMUNITIES Opportunities for community engagement and advancement in rural and remote communities are reduced. SOLUTIONS Inter-professional learning at graduate and at post-graduate level provides a proactive approach to promulgating health literacy and reducing the barriers between health professionals and consumers. The patient care experience from the perspective of functional abilities is flagged as a national Key Performance Indicator. Health literacy needs inclusion in the school curriculum from years K to 12 in order to increase its value to all Australians. 22

24 SCIPPS Publications Published papers - Peer reviewed 1. Aspin, C, Jowsey, T, Glasgow, NJ, Dugdale, P, Nolte, E, O Hallahan, J, Leeder, SR. (2010). Health policy responses to rising rates of multi-morbid chronic illness in Australia and New Zealand. Chronic Illness 2010; 34(4): Aspin, C, Brown, N, Jowsey, T, Yen, LE, Leeder, SR. They judge you on your looks, your dress, and then how black you are: Confronting obstacles to health care for Aboriginal and Torres Strait Islander people with chronic illness. BMC Health Services Research Accepted for publication April Douglas, KA, Yen, LE, Korda, RJ, Kljakovic, M, Glasgow, NJ. (2011). Chronic disease management items in general practice: a population-based study of variation in claims by claimant characteristics, Medical Journal of Australia 2011; 195 (4): Essue, B, Kelly, P, Roberts, M, Leeder, SR, Jan, S. (2011). We can t afford my chronic illness! The out-of-pocket burden associated with managing chronic obstructive pulmonary disease in western Sydney, Australia. Journal of Health Services Research 2011; 16(4): Essue, B, Jowsey, T, Jeon, Y-H, Mirzaei, M, Pearce-Brown, CL, Aspin, C, Usherwood, T. (2011). Informal care and the self-management partnership: implications for Australian health policy and practice. Australian Health Review 2011; 34(4): Gillespie, JA, Yen, LE, Jeon, Y-H, Wells, R. (2008). The diffusion of health services innovation to manage chronic illness: comparing two Australian urban regions. Population Health Congress 2008: Accepted Full Papers. 7. Glasgow, NJ, Jeon, Y-H, Kraus, S, Pearce-Brown, CL (2008). Chronic disease self management support: the way forward in Australia. Medical Journal of Australia 2008; 189(10): S14-S Jan, S, Essue, B, & Leeder, SR. (2012). Falling through the cracks. The hidden economic burden on households of chronic illness and disability in Australia. Medical Journal of Australia 2012; 196(1): Jeon, Y-H, Black, A, Govett, J, Yen, LE, & McRae, IS. (2011). Private health insurance and quality of life: Perspectives of older Australians with multiple chronic conditions. Australian Journal of Primary Health (Published online 17 November 2011). 10. Jeon, Y-H, Essue, B, Jan, S, Wells, R, & Whitworth, JA. (2009). Economic hardship associated with managing chronic illness: a qualitative inquiry. BMC Health Services Research 2009; 9: Jeon, Y-H, Jowsey, T, Yen, LE, Glasgow, NJ, Essue, B, Pearce-Brown, CL, Kljakovic, M, Mirzaei, M, Usherwood,T, Jan, S, Kraus, S and Aspin, C. (2010). Achieving a balanced life in the face of chronic illness: A qualitative study of patient experience. Australian Journal of Primary Health 2010; 16: Jeon, Y-H, Kraus, S, Jowsey, T and Glasgow NJ. (2010). The experience of living with chronic heart failure: a narrative review of qualitative studies. BMC Health Services Research 2010; 10: Jowsey T, McRae IS, Yen L. Re: The Patient Viewpoint. Annals of Family Medicine Track, 25 January 2012 [invited letter] 14. Jowsey T, Gillespie, JA, Aspin, C. (2011), Effective communication is crucial to self-management: the experiences of immigrants to Australia living with diabetes. Chronic Illness 2011; 7:6 originally published online 15 November DOI: /

25 15. Jowsey, T, Jeon Y-H, Dugdale, P, Glasgow, NJ, Kljakovic, M, Usherwood T. (2009). Challenges for co-morbid chronic illness care and policy in Australia: a qualitative study. Australia and New Zealand Health Policy 2009; 6: 22. DOI: / Jowsey, T, Pearce-Brown, CL, Douglas, KA, & Yen, LE. (2011). What motivates Australian health service users with chronic illness to engage in self-management behaviour? Health Expectations 2011; 15(1). 17. Jowsey, T, Yen, LE, Wells, R, Leeder, SR. (2011). National Health and Hospital Reform Commission final report and patient-centred suggestions for reform, Australian Journal of Primary Health 2011; 17(2): Jowsey, T, Yen, LE, Ward, NJ, McNab, J, Aspin, C, Usherwood, T, SCIPPS Team. It Hinges on the Door: Space time and identity in Aboriginal Health Services. Sociology Health Review [in Press] 19. McRae, I, Yen, L, Jeon, Y-H, Herath, P, Essue, B. Multi-morbidity is associated with higher out-ofpocket spending: A study of older Australians with multiple chronic conditions. Australian Journal of Primary Care Accepted for publication April Pearce-Brown, CL, Grealish, L, McRae, IS, Douglas, KA, Yen, LE, Wells, R., et al. (2011). A local study of costs for private allied health in Australian primary health care: Variability and policy implications. Australian Journal of Primary Health 2011; 17(2): Ward, NJ, Jowsey, T, Haora, PJ, Aspin, C, & Yen, LE. (2011). With good intentions: complexity in unsolicited informal support for Aboriginal and Torres Strait Islander peoples. A qualitative study. BMC Public Health 2011; 11: Yen, LE, McRae, IS, Jeon, Y-H, Essue, B, Herath, PM. (2011). The impact of Chronic Illness on workforce participation and the need for assistance with household tasks and personal care by older Australians, Health and Social Care in the Community 2011; 19(5): Yen, LE, Gillespie, JA, Jeon, Y-H, Kljakovic, M, Brien, J, Jan S, Lehnbom, E, Pearce-Brown, CL, Usherwood, T. (2010). Health professionals, patients and chronic illness policy: a qualitative study. Health Expectations 2011 Mar; 14(1): Yen, LE, Wells, R., Gillespie, JA, & Leeder, SR. (2007). The search for better financing of health care including that for people with chronic illness. Medical Journal of Australia 2007; 186(9): Published papers - Non peer reviewed 1. Essue B, Mirzaei M, Leeder SR, Colagiuri R. Epidemiology of diabetes. The Serious and Continuing Illness Policy and Practice Study (SCIPPS), The Menzies Centre for Health Policy, Essue B, Yen LE, Usherwood T, Glasgow NJ, Leeder SR. Epidemiology of chronic obstructive pulmonary disease. The Serious and Continuing Illness Policy and Practice Study (SCIPPS), The Menzies Centre for Health Policy, Gourlay K, Jowsey T, and the SCIPPS team. Practice Nursing Development: Implications and opportunities in the management of continuing illness. The Serious and Continuing Illness Policy and Practice Study (SCIPPS), The Menzies Centre for Health Policy, Jeon Y-H and Kraus, S. Annotated Bibliography for Chronic Care Program Evaluation. The Serious and Continuing Illness Policy and Practice Study (SCIPPS), The Menzies Centre for Health Policy, Mirzaei M, Yen LE, Leeder SR. Epidemiology of chronic heart failure. The Serious and Continuing

26 Reports Illness Policy and Practice Study (SCIPPS), The Menzies Centre for Health Policy, Gillespie JA, McNab J. Improving Health Literacy in Seniors with Chronic Illness, Canberra: National Seniors Productive Ageing Centre, Jowsey T, Yen LE, Aspin C, Ward NJ. People I can call on - Experiences of Chronic Illness Community Report, The Menzies Centre for Health Policy, Papers under review 1. Ceramidas, DM, & Glasgow, NJ. Multi-morbidity: The elephant in the room? 2. Corcoran, K, McNab, J, Girgis, S, Colagiuri, R. Is Transport a Barrier to Health Care for Older People with Chronic Diseases? A Review. 3. Corcoran, K, Jowsey, T, Leeder, SR. One size does not fit all: the different experiences of those with chronic heart failure, type II diabetes and chronic obstructive pulmonary disease. 4. Yen L, McRae I, Jowsey T, Kljakovic M, Dugdale P, Banfield M, Mathews P, Gillespie J. Selfmanagement work by older people with chronic illness- how much time does it take? 25

27 The Menzies Centre for Health Policy is a collaborative Centre between The Australian National University and the University of Sydney. It aims to provide the Australian people with a better understanding of their health system and what it provides for them. The Centre encourages informed debate about how Australians can influence health policy to ensure that it is consistent with their values and priorities and is able to deliver safe, high quality health care that is sustainable in the long term. For more information: Menzies Centre for Health Policy D02 Victor Coppleson Building University of Sydney Phone: Fax: mchp@sydney.edu.au Website: 26

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29 Menzies Centre for Health Policy For more information: Menzies Centre for Health Policy D02 Victor Coppleson Building University of Sydney Phone: Fax: mchp@sydney.edu.au Website: Template by Digital and Print Media, the University of Sydney. The University reserves the right to make alterations to any information contained within this publication without notice. CRICOS provider No A