This study has demonstrated that patients with chronic illnesses, who received care from a wide range of health services, faced a range of challenges in accessing these services and had serious concerns about their unmet needs and wants within the health system. These include poor communication with HCPs and provision of information, poor organisation of service delivery and long waiting time to see HCPs, insufficient facilitation of self care, insufficient holistic and continuing care and not involving patients and carers in decision-making. Most of these has been recognised by the NSW Severe Chronic Disease Management Program  and all are closely related to the key concept of patient-centred care.
These concerns feature strongly in international experience [11, 18–20] and reflects experience in Australia too. We have interpreted these as relevant to the needs, wants and preferences of patients in the belief that these influence health services and the level of care that patients receive . In their survey of 7505 patients, Barton et al., reported the degree to which patients’  wants and needs were met in general practices throughout Australia (response rate 60%). According to their survey, 70% of participants felt that their needs and wants were met and that their care was very good or excellent . In contrast, the present qualitative study demonstrated that patients and carers with chronic illnesses, who receive care from a wide range of health services, faced a range of challenges in utilizing those services and had serious concerns about their unmet needs and wants within the health system. This is consistent with the results of a qualitative study by NSW Health .
Given the frequent endorsement in policy rhetoric that patient centredness is a desirable attribute of a health care system that technically and humanely meets the needs of patients with chronic illness, it is reasonable to critically appraise these policies to assess whether the rhetoric translates into policy action.
The National Chronic Disease Strategy and National Service Improvement Frameworks are the current Australian national policy guides that reflect the journey of chronically ill patients from prevention to management . However, they do not contain implementation plans since these have been left to State health authorities. While patient centredness has not been defined in these documents, patient needs have quite clearly been identified as the principal element in providing optimal care for chronically ill patients .
Currently, there are several chronic care programs running in NSW [17, 26], ACT , and other Australian states [28–31], all of which are intended to address the challenges of caring for chronically ill patients and to assist them to better manage their conditions. According to the national strategy, these policies should contain implementation plans .
The NSW Chronic Care Program is the main NSW Health initiative aimed at reducing avoidable hospital admissions and improving quality of life for people with chronic illness and their carers . Although the term patient centredness has not been mentioned in the first phase of the NSW Chronic Care Program, the concept has been introduced as the first principle of the program in its second phase [32, 33]. Patient centredness has not been defined clearly in any of the program’s relevant documents, but rather it has been taken to mean “placing patients at the centre of care [which] has implications for what, how, where and when care is delivered” . The aim has been mentioned in order to have an impact on the health services delivered locally so that it is more responsive to local and individual patient needs .
As part of the Perfecting Health Care Delivery Initiative (Maggie Program) of Hunter New England Area Health Service, a qualitative study was conducted by NSW Health to investigate the concerns of patients and carers in receiving services from the health system. The main issues identified were: a) difficulties and delays in accessing services and frequent cancellation of appointments; b) poor communication from staff; c) long waiting times once patients have arrived for an appointment and overbooking of clinics; d) busy, noisy environments where staff did not seem to know what they were doing; and e) patients having to move to a number of different places to receive treatment . These findings are confirmed by those of the present study. However, these have not been reflected in the NSW Chronic Care Program as performance goals. Rather, to ensure that the program remains truly patient focused, it was suggested that working parties refer continually to the question, “What is best for the patient?” . This approach does not provide sufficient direction about how health systems can best address the needs and wants of patients.
Similarly, in the ACT, the first principle of the ACT Chronic Disease Strategy 2008-2011 is patient centredness . It is defined as “care where people are consulted on all aspects of their care, and care is focused on the whole person, care is planned in partnership with the patient and their carers and family as agreed with the person or their advocates” . While this definition is clearer than that in the NSW Chronic Care Program, it does not mention patients’ wants and preferences . Furthermore, there is no clear implementation plan to achieve the goal of patient centred care in the draft program which was published in 2008. Potentially, the ACT definition of patient centredness can be used for resource allocation and goal setting to a greater degree than the NSW Chronic Care Program.
Although there are examples of implemented patient centred programs in NSW [34, 37], there is no strategic or business plan available on NSW Health, SWAHS or ACT Health websites which guides action in the health system. This may be due to unclear definitions of patient centredness in the chronic care programs.
Despite this gap, a number of patient centred outcomes have been used as measures to identify the successful implementation of strategies to evaluate various models of care in NSW . These include improved documentation of patient encounters, reduced numbers of falls and medication errors, reduced numbers of re-presentations to emergency departments and re-admissions, increased numbers of attendance at health promotion activities and primary health care facilities, improvements in a range of mental health outcomes and generic measures of improvements such as reduced numbers of complaints and critical incidents . Each of these factors is considered to be an essential ingredient of a health system that is focused on the overall health and well-being of patients. Interestingly, patients’ needs, wants and preferences are missing from the list.
Access to holistic patient centred care with consumers as partners has been identified as one of many frequently raised issues and suggestions to reform primary health care by community groups in the recent NHHRC final report . At a state level, the concept of patient-centredness has also been identified by the Special Commission of Inquiry into Acute Care Services in NSW Public Hospitals as an essential ingredient in the reform of the NSW hospital system . The report says that effective care for people with chronic illness must be based on the needs of patients rather than on the management of specific medical conditions, an approach that has been confirmed by the people we spoke to during the course of this study.
The authors of this paper consider that answering the question, “What is best for the patient?”  will not be sufficient to achieve a patient centred health system which is the first principle of both NSW and ACT chronic care programs [33, 35, 40]. Instead, we argue in this paper that needs, wants and preferences of patients and carers should be found and addressed in the chronic care programs.
As this paper has shown, patient centredness has been placed rhetorically at the centre of national and NSW chronic disease programs. However, there is neither a clear definition of patient centredness nor are there clear performance goals, implementation plan, and evaluation criteria in place. Findings from this study have confirmed the importance of integrating the needs and wants of patients into chronic care programs. As HCPs have indicated, close attention can be paid to these needs and wants of patients by improving patient health literacy, improving communication with HCPs, enhancing access to information technology and addressing other communication related issues.
This study has clearly identified what patients and carers want from the health system and these are similar to those identified by NSW Health . These can be used to set up strategies and implementation plans with key performance areas to achieve patient centredness. These must then be translated into health system redesign features to address the unmet goal of the NSW Chronic Care Program. Ideally, this needs to be replicated in ACT and across Australia.
The finding of this study may be limited by the fact that they are based on interviews conducted in two specific locations in Australia and as a result, they may not be generalisable to other locations. The transcriber was unable to identify individual HCPs so it was not possible to ascribe comments to specific people or to recognise their organisation.