Care of people with cancer is complex and multifaceted, involving a range of services and health professionals, often in different settings. In the absence of appropriate coordination of the different elements of care, patients and their families report becoming ‘lost’ in the system, often experiencing unnecessary morbidity and distress.1 Lack of coordination between services can result in fragmented care, sub-optimal management and high health care costs.2,3 Such fragmentation of care is exacerbated by the absence of clear referral pathways and suboptimal communication between health care providers and between providers and patients.
The need to improve continuity of care has been highlighted in a number of national reports.1,4 The National Service Improvement Framework for Cancer4 identifies an optimal cancer service as one in which people with cancer ‘will experience the cancer journey as seamless and continuous care provided by one integrated service’. It notes that achieving such continuity of care requires linkages and coordination:
- among different treatment modalities
- among various health professionals and care providers
- among different individuals within the same discipline (eg medical or nursing staff on rosters)
- within any single service, over time
- across the spectrum of cancer care (from detection through treatment to palliative care), and
- across different services types and settings (public and private, inpatient and ambulant, general and specialist hospitals).4
Delivery of integrated and coordinated care is likely not only to enhance the patient’s experience and minimize the likelihood of further distress, but may also contribute to improved clinical outcomes and efficiency in delivering health care services.
At a jurisdictional level, a range of approaches have been taken to the implementation of care coordination, including appointment of designated Care Coordinator roles and a broader system-based approach. Neither approach has yet been evaluated.
The Clinical Oncological Society of Australia (COSA) has identified cancer care coordination as a priority issue of concern to its members. In 2006, COSA convened a one-day workshop to:
- define the problem of care coordination
- provide some context for exploring a range of strategies for achieving cancer care coordination at the system, organisational, team and individual levels
- review the evidence and experiences of using care coordinators as a means of achieving care coordination, from the perspective of consumers, care coordinators, health care teams and policy makers.
The workshop identified a range of issues relevant to cancer care coordination, with the importance of achieving a patient-centred rather than disease-centred focus the central theme. A set of principles was developed to underpin care coordination in Australia at the patient, team and system level (see Appendix I). A report on the outcomes from the workshop has recently been published.5
Workshop overview
A second workshop was convened by COSA prior to the 2007 Annual Scientific Meeting in Adelaide. The aim of the workshop was to define expected outcomes from cancer care coordination and methods for evaluating those outcomes and potential benefits, including health outcomes and economic outcomes. The ultimate goal of the workshop was for participants to achieve a shared understanding of what could be achieved through coordination of cancer care, rather than to identify strategies for the implementation of care coordination.
The workshop was attended by around 50 participants from a range of backgrounds with an interest in cancer care coordination. Attendees included health professionals (including cancer care coordinators), health service administrators, consumers and representatives from cancer and government organisations. Their roles included cancer care coordination, funding, evaluation and those experiencing care coordination.
Workshop introduction
Chief Executive Officer of Cancer Australia, Professor David Currow, opened the workshop by emphasizing the importance of care coordination in the management of patients with cancer in Australia and highlighting the complexities of Australia’s unique geography and mix of public and private health service delivery. He stressed the importance of ensuring that the delivery of patient care is appropriate, timely, efficient and effective and that the process of navigation through the patient journey respects the challenge faced by those diagnosed.
Professor Patsy Yates presented an overview of outcomes from the 2006 workshop and described the principles for care coordination developed as a result of the workshop. She outlined the objectives for the 2007 workshop, acknowledging that achieving coordination of care was a multilevel issue and that a range of other strategies might also be relevant to its implementation, including development of role descriptions and education of health professionals. In providing their opening comments, Professor Currow and Professor Yates made reference to other relevant initiatives, such as the Cancer Australia CanNETs project, which aims to map the pathway from suspicion of cancer to the development of a definitive treatment plan, and the Continuing Professional Development project for cancer professionals, funded by Cancer Australia and conducted by a consortium led by the Centre for Innovation in Professional Health Education and Research at the University of Sydney.
Panel discussion
In outlining their views on care coordination, a panel discussion agreed that the patient experience should be the focal point. Given that outcomes for many cancers in Australia were good by international standards, it was important to tease out what could or could not be improved by better care coordination.
The panel, comprising Professor Currow, Professor Yates and Professor Bruce Barraclough (Medical Director, Australian Cancer Network), discussed the importance of demonstrating both clinical and nonclinical outcomes from care coordination. There was recognition that there might be a number of intermediate points at which outcomes could be measured between the traditional ‘checkpoints’ of diagnosis and death. They concluded that improved patient satisfaction alone would not be sufficient to justify significant investment in improvements in coordination of care. However, it was argued that other non-clinical outcomes that were important to patients might influence a patient’s response to treatment and improve health service utilisation, for example improvements in the patient experience may in turn increase patient engagement, improve compliance and reduce downtime in health service utilisation. The importance of considering longer term impacts of care coordination, as well as immediate effects, was emphasised, as was the need to clearly identify outcomes in order to engage the community about benefits beyond mortality. It was suggested that better care coordination might result in improvements in patient survival and morbidity by ensuring that patients were referred for the right care and treatments in a timely fashion.
While the aim of the workshop was not to discuss strategies for care coordination, the panel emphasised the importance of care coordination being seen as a shared responsibility across the entire health care team, rather than being the role of one or two individuals. It was emphasised that care coordination was a systembased approach that relies on linkages across the health care system, including both public and private and tertiary and primary care.
Background to evaluation and outcomes
To provide some context for discussion of evaluation and outcomes, Dr Marian Haas, from the Centre for
Health Economics and Research Evaluation at the University of Technology Sydney, gave a brief presentation outlining key issues for consideration.
In the context of health service delivery, Dr Haas described evaluation as being more than an audit – because it measured associated and causative factors – and less than research, which was about achieving knowledge for its own sake. However, she explained that the subject matter was the same in that evaluation measured the extent to which the delivery of health services met pre-determined objectives.
Dr Haas highlighted four key features of evaluation:
- structure (the organisational framework)
- inputs (the resources used)
- process (the activities undertaken)
- outcomes (the impact and cost of activities).
Participants were encouraged when thinking about outcomes of care coordination to consider how they would know that care was coordinated at the patient, health service and system level. Examples were given to demonstrate what should be considered at each of these levels.
Workshop outcomes
Workshop outcomes were achieved through small multidisciplinary group discussion, followed by facilitated feedback and refinement at a plenary level. Time limitations precluded a full consensus approach and the outcomes reported summarise areas of convergence within the group.
Participants were asked to consider issues at a national level using three main frames of reference:
1. people who make investment decisions – funders/system level
2. people who provide care – health services/teams/networks
3. people who receive care – cancer patients/consumers.
Outcomes from coordinated care
Participants identified the outcomes they would expect to see at a patient, service network and investor level within 12–18 months of implementation of a coordinated approach to cancer care. There was some overlap in proposed outcomes for the three levels.
In considering outcomes, two essential components of care coordination were identified, namely the need for:
- clearly defined patient care pathways
- management of care through effective multidisciplinary teams.
Participants agreed that these components should be in place across the whole system, regardless of geography, social or cultural differences and whether care was delivered in the public or private sector. While the workshop did not consider individual strategies for achieving care coordination, in defining these outcomes, participants recognised the need to consider potential workforce and resource implications of the approaches listed.