Chronic conditions account for 87 per cent of deaths in Australia and one in four people have two or more chronic illnesses.[i] The health care system can be an overwhelmingly confusing place for this group of consumers who often have multiple specialists, appointments and medications. Across Australia, there are a range of approaches designed to help this group better navigate a fragmented health care system. One such approach employs nurse navigators or health navigators to help consumers fit all the parts of their health care puzzle together. These approaches are known broadly as patient care navigation.
With financial support from ACT Health, the Health Care Consumers’ Association set out to determine whether such an approach could be beneficial in the ACT. We spoke to consumers and health professionals about their experiences in receiving and delivering coordinated care and found that gaps in coordination were experienced by both groups. These gaps create challenges for health professionals and potentially contribute to poorer health outcomes for consumers. [ii]
Clear gaps remain between the current coordination of care and the needs of people living with chronic and complex conditions in the ACT. According to consumers, these unmet needs warrant improvements to the current state of care coordination, such as
- better and more personalised information for self-management,
- greater acknowledgement of the interaction of multiple conditions,
- more attention to personal and social issues,
- better knowledge of and linkage to community-based services, and
- more time for comprehensive assessment and planning.
Consumers feel that these gaps make it harder for them to stay well, look after their own health, and stay out of hospital. Rather than coordinated care, consumers with multiple conditions experience health care as a series of ad hoc interventions by a diverse range of health professionals and lay people.
Consumers want and need individualised care because the number and progression of their conditions, as well as the particular interactions of their conditions, is individual.
I need you to understand my different requirements because I’m different to Joe Bloggs who came in before. (Consumer)
This desire for customised care demands that care coordination be tailored to the individual patient rather than a one-size-fits-all approach to chronic conditions management. Revealingly, consumers felt that better information, tailored to their circumstances could remove a number of barriers. For example, ensuring consumers understand their conditions and are aware of available services and care options potentially reduces costs, time and anxiety as well as aiding self-management.
Practical support is the biggest thing you need, knowing where to go for subsidised things. Not being given money but you know, where are the free services? (Consumer)
While coordination of clinical and non-clinical care is unquestionably being performed by skilled and dedicated health professionals in the ACT, it is not consistent. Often, the difference between good coordination and great coordination comes down to an individual person (GP, nurse, allied health) who has experience, a supportive team, good networks and takes charge. These health professionals know that medical needs and social needs are inextricable and will go the extra mile to coordinate care for their patients.
Every single patient has some kind of issue. So it’ll be mostly psychological, and some of them have infections, severe mental illness, carer situations at home where they’ve got financial problems, can’t drive because they’re blind. Just so many aspects of it that it’s enormous, so we feel that we do a really good job of care coordination because we don’t just look at the patients’ disease, we look at them as a whole person. (Health professional)
A patient navigation service can meet some of these needs, and most importantly, the priority needs of consumers and health professionals. The clear advantage of a patient navigator is its capacity to provide continuity of care from hospital, to community, into the patient’s home, and back to hospital if necessary. Navigators may also circumvent many of the pressures, such as patient flow and limited time felt by many health professionals.
Early in the consultation process, the HCCA was asked a question – “If everyone did their jobs properly, would we really need patient navigators?” It is an important question, and a definitive answer was well beyond the limits of our research. However, considering the complexity of the health care system and the unique challenges of managing multiple chronic and complex conditions we can argue for change based on a different question – How do we improve coordination for people with complex and chronic conditions without placing an extra burden on existing resources? Based on our research, in the short-term at least, a patient navigator service is an easily defensible answer.
[i] Australian Institute of Health and Welfare 2018. Australia’s health 2018: in brief. Cat. no. AUS 222. Canberra: AIHW.
[ii] Coe K. and S. Spiller., A model for patient navigation in the ACT for people with chronic and complex conditions. Canberra, Australia: Health Care Consumers’ Association. September 2018.