Clinical Excellence Commission NSW, Sydney, New South Wales; Quality and Clinical Effectiveness Advisory Committee, Cancer Institute NSW, Eveleigh, New South Wales.
Consumer engagement has blossomed in recent decades into a comprehensive approach not only engaging people in their own care, but also in key health care system improvements at a range of levels including health services, research, governance and policy. These changes parallel international progress in patient based care and culminate in the recognition of the need for consumer partnerships in recent national and state frameworks. Striving to deliver patient-based care means that we need to rise above the ‘disease-based’ model of care. Consumer engagement to improve Australian cancer care has grown to support all aspects of the journey.
“Why would you want a consumer on the guidelines working group? This is about best clinical practice. We know the research evidence,” said the doctor. That statement was delivered over 15 years ago now. How things change! Recognising the importance of the patient’s perspective and engaging consumers in all levels of activity in health care has come a long way in Australia in a relatively short time period of time.
While promoting consumer engagement in health care has been a more recent development, its origins can clearly be linked to grass-roots community engagement movements in the 1960s and 1970s and public engagement (particularly by UK governments) in the 1980s and 1990s. Initially, patient engagement in health care focused on individual patients and centred on ‘self-management’ of chronic conditions and ‘shared decision making’ for treatments. Equally, the broader social rights movement can be seen to have generated a focus on ‘patient rights’. In 1987, Consumers Health Forum of Australia was established to champion consumer issues. Prominent advocacy groups started to form centred on specific diseases such as HIV-AIDS and cancers.
Australia was recognised early on as leading the way for the world in consumer advocacy. Starting in the late 1980s, researchers worked to identify core components of ‘patient-centred care’, and in 1993 The Picker Institute (US) identified eight domains: respect for patient preferences and values; emotional support; physical comfort; information, communication and education; continuity and transition; co-ordination of care; involvement of the family and friends; and access to care.1 It was acknowledged that really understanding patient values and preferences required establishing a healing relationship between clinicians, patients and patients’ families, grounded in strong communication and trust.2 By 2001, recognition of ‘patient-centredness’ as an essential characteristic of high quality care by the US Institute of Medicine, cemented patient focus as a key domain of quality.3
Against a background of high profile inquiries in Australia highlighting harm to patients and the need improve patient safety,4 consumer engagement has increasingly focused on improving care delivery and on governance. Patient involvement has been recognised as a way to deliver safer care for individuals and to improve accountability in the health services, but requires a shift from provider-focused ‘paternalism’,5 to ‘patient empowerment’.
Within the last six years, a growing body of evidence has emerged indicating that patient-based care – with patients as true partners – not only improves the patient care experience, but also results in clinical and operational-level benefits. This growing evidence includes decreases in mortality,6,7 rates of hospital-acquired infection,8 surgical complications,9 and improvements in patient functional status,8 and higher quality clinical care.10 The business case for patient-focused care highlights decreased malpractice claims, decreased staff turn-over, reduced operating costs and increased market share.11 Leading health care services are those that are transforming their care delivery with a focus on patient and consumer engagement at all levels – from the ward to the Board.12
A systematic review by Doyle et al.13 has also highlighted the positive association between self-reported patient experience, clinical outcomes and resource utilisation (eg. impact on length of stay). Increasingly, patient feedback is being used at a service and systems level to drive patient-focused approaches to quality improvement, evidenced in Australia by state-based surveys of cancer patients. For example, when the Cancer Institute NSW conducted its inaugural patient experience survey in 2007, ‘discussing anxieties and fears’ and ‘pain management’ stood out as key aspects of care for improvement.14
Patient narratives and stories are also acknowledged as powerful drivers of change. The shared stories of people living with cancer have provided great insights and motivated us to aim to ‘get it right’. Sharing his story of a diagnosis of prostate cancer, Ian Roos encapsulated the journey through diagnosis and treatment choices for many cancer patients – fear of cancer, confronting mortality, quality of life choices and the question of ‘why me’?15
Over the past 40 years, since the Clinical Oncological Society of Australia (COSA) was established, consumer engagement in cancer care has blossomed into a comprehensive approach, not only engaging people in their own care but also in key health care system improvements at a range of levels including health services, research, governance and policy. Australia has a proud history of consumer engagement and advocacy in the cancer field. Early leading groups included Breast Cancer Advocacy Groups (Vic – 1994 and NSW – 1997), Prostate Cancer Foundation of Australia (1996) and Breast Cancer Network Australia. CanTeen was developed in 1985, advocating for young people with cancer.
‘Nothing about me without me’,16 – the catch phrase for improving the quality of healthcare by involving patients – exemplifies the approach used in Australia. Early efforts in consumer engagement ensured that Australian cancer care focused on a comprehensive view of care delivery – ‘the whole journey’. The prominence of psychosocial care for cancer patients was driven by consumers and resulted in the world’s first guidelines in this area, released by the National Breast Cancer Centre.17
Cancer consumer groups helped identify crucial issues to be addressed – talking about cancer, breaking bad news, support for partners and children, palliative care and survivorship. Consumers also helped clinicians to consider guidance on subject matter that they were typically not comfortable with – the ‘no treatment’ option and alternative and complementary therapies. Issues for younger cancer patients came to the foreground in consideration of fertility preservation before cancer treatment and treatment during pregnancy. With the increasing successes of treatments for a range of cancers, came the question of how to support people living with the longer term sequelae of those treatments. Personalised, tailored therapies appeared on the market, with evidence of improved survival rates. Consumers mortgaging their homes reminded us that these new therapies often came with a price tag. In areas where services were perceived as lacking, cancer advocacy groups lobbied for increased access to health services (eg. radiotherapy).
Aligning research priorities with consumer priorities is another area where Australian consumer groups have shown leadership. The ‘Consumer Involvement in Research Program’, initiated by Cancer Voices NSW in 2002 in partnership with Cancer Council NSW, has supported consumer engagement through training and ‘match making’ consumers with research programs – either as advisors, grant reviewers or investigators. More broadly, cancer consumers have been involved in helping to identify priorities for future research across the patient journey continuum,18 and ensuring that consumer-friendly websites about clinical trials are available.
COSA has also contributed to promoting consumer engagement in clinical cancer research. Through the ‘Enhancing Consumer Engagement in Clinical Cancer Research’ project, funded by Cancer Australia, COSA has focused on developing a comprehensive strategy for increased consumer involvement at all levels of clinical cancer research, through increased training, mentoring and collaboration across the 14 Cancer Cooperative Trial Groups.
Consumers have taught us the importance of ‘assuming nothing’. Assumptions can lead to “patient preference misdiagnosis”.19 This gap between ‘what patients want’ and ‘what doctors think patients want’ is illustrated by a study of the views of breast cancer patients.20 Although doctors believed that 71% of patients with breast cancer would rate keeping their breasts as a top priority, only 7% of patients rated this as their top priority. Similarly doctors thought that 96% of breast cancer patients considering chemotherapy would rate living as long as possible as a top priority, when in fact only 59% agreed.
This lesson of ‘assuming nothing’ has extended into the cancer consumer groups with the acknowledgement that ‘cancer patients’ are not one amorphous group. Rather, in the broad multicultural community of Australia with different cancers profile, there has been increasing recognition over recent decades of the need to hear voices from a range of cancer survivors. The challenge to engage ‘hard to reach’ consumers continues, particularly in the Indigenous and culturally and linguistically diverse communities, as evidenced by the work of CanNET Victoria, supported by Cancer Australia.21
The need to support cancer consumers with science and advocacy training was also identified early on in Australia, with a program developed in the late 1990s by the National Breast Cancer Centre in collaboration with Breast Cancer Network Australia. Consumers having attended training were then supported to engage in decision-making forums and committees through the Breast Cancer Network Australia’s ‘Seat at the Table’ program.
As synergies among the cancer consumer groups and their priority issues emerged, Cancer Voices formed in most Australian states, initially in NSW (2000), culminating in the establishment of Cancer Voices Australia in 2006.22 These organisations work at a range of levels, ensuring that the voices of people affected by cancer continue to be heard and consumers are engaged across the spectrum.
Working in partnership Cancer Voices Australia, Cancer Australia developed a National Framework for Consumer Involvement in Cancer Control.23 Released in 2011, this framework identified key elements to help guide organisations to engage consumers. The framework highlighted four essential elements for effective cancer consumer involvement: committed organisations; capable consumers; inclusive groups; and shared focus. The framework’s approach to consumer participation builds on Popay’s model for community engagement, which is widely used internationally.24 The framework will be accompanied by resources tailored for a range of professions to further support engagement.
In 2011, the Australian Commission on Safety and Quality in Health Care released a national discussion paper on ‘Patient Centred Care: improving quality and safety through partnerships with patients and consumers.’ This paper summarised international initiatives and research evidence about partnership approaches to improving quality health care.25
Moving beyond discussion, the commision’s National Safety and Quality Health Service Standards have devoted an entire standard to ‘Partnering with consumers’,26 with engagement of consumers of health services being integrated throughout the remaining standards. This new system for accreditation of health services came into effect across Australia on 1 January 2013.
In recognition that an organisation-wide approach is required to transform care for a greater patient focus, the Clinical Excellence Commission released ‘The Patient Based Care Challenge’ in NSW, promoting strategies for engaging patients, families and carers at all levels within health care services.27 Rising to the challenge of transforming health care sees services undertaking engagement in strategic planning, quality improvement and assurance, staff education and employment selection, utilising patient feedback, through to involvement in bedside handover and activation of medical emergency teams. The Chris O’Brien LifeHouse at Royal Prince Alfred Hospital is the first cancer-specific service to sign up to The Patient Based Care Challenge in NSW.
Striving to deliver patient-based care means that we need to rise above the ‘disease-based’ model of care that we inherited in the 18th Century and move beyond the military model of care delivery that dates back to ancient Rome.28 Tanya Hall’s 2012 article, entitled ‘More than the sum of our parts’,29 challenged us to see some of the present deficiencies in cancer care too often focused on “pathology at the expense of the person”. While acknowledging receipt of excellent medical care, Hall was “surprised and dismayed by the lack of basic humanity and courtesy from some of the health professionals I encountered.” Her concluding advice to health care professionals is to “try, always, to look beyond the diseased part you are treating to the person underneath. Perhaps then the rhetoric of patient-centred care can begin to approach reality.”
Thinking back over the decades, consumer engagement to improve Australian cancer care has grown to support all aspects of the journey and become a mainstream approach particularly, at a systems and policy level. I recall reflecting on how far things really had come when in more recent years a doctor said to me, “Obviously, we will have a consumer included on this working group. We couldn’t do it without them.” We have come a long way.
The author acknowledges the input of Sally Crossing and Ian Roos in the preparation of this article. Their work and that of many other people living with cancer inspires us all.
This article is dedicated to Emeritus Professor Tom Reeve – wise mentor and champion of consumer engagement in cancer care.