Health professionals are gathering more data on colorectal cancer care than ever before, yet what is measured often has little relationship to the results that matter most to patients. A world-first collaboration between Bowel Cancer Australia and not-for-profit International Consortium for Health Outcomes Measurement (ICHOM) is helping to turn this around.
Bowel cancer is the third most common cancer in the world, with around 1.4 million new cases diagnosed each year. It is predicted that this figure will rise to 2.4 million new cases annually worldwide by 2035. In Australia, bowel cancer affects approximately 15,000 people, and is responsible for around 4,000 deaths each year.
While bowel cancer is often successfully treated in the early stages, up to half of the estimated 15,000 Australians diagnosed with bowel cancer each year will have advanced disease at diagnosis or will go on to develop it, and only 16 per cent are expected to be alive at five years. The goal of treatment for advanced patients is to therefore help them live for as long as possible in as good a state of health as possible.
However, the reality is we do not have a clear picture of how Australians with bowel cancer, at any stage, are faring given the lack of publicly available data. We do not know how many people are living with advanced bowel cancer, how long they live for, what treatment they receive or how they respond to this treatment. We only have records on the number of people who die every year after a diagnosis of bowel cancer (i.e. National Mortality Database)and the Australian Cancer Database only captures the number of people diagnosed in Australia with a particular cancer, not their stage of disease or the treatment they have received.
The development of the Colorectal Cancer Standard Set
In July 2015, Bowel Cancer Australia joined an international team to develop a standard set by which health professionals, hospitals and governments can measure, report, and compare health outcomes, and importantly, to facilitate the collection of patient reported outcomes.
Comprised of specialists, health organisations, outcomes experts, and patient representatives, the ICHOM Working Group defined the minimum Standard Sets of outcomes to achieve a global standard in colorectal cancer care, along with case-mix factors to support risk-adjustment and meaningful comparison. Working Group members participated on a purely voluntary basis, with contributions from 20 organisations and medical research centres across 10 countries.
A sample of more than 200 bowel cancer patient representatives from Australia, North America and Europe, were then invited to share their lived experience of cancer, and their perspectives on their treatment and management, to help shape the final global standard in care.
Unsurprisingly, long-term health outcomes and quality of life were identified by patients as the most important, yet unacknowledged, aspects of bowel cancer care.
For patients, bowel cancer outcomes are not limited to the short recovery period after surgery or treatment, and the impact of the cancer often remains for the rest of their life. Overall bowel function, dietary considerations, anxiety and depression, were cited as important factors when assessing quality of life. Fear of ostomy, fear of disease progression and concerns about the future were also among the main concerns.
Health care in a value-based world
Measuring, reporting, and comparing health outcomes across the entire continuum of care are among the most important steps toward rapidly improving patient care and reducing costs. That’s not to say this is a cost-cutting exercise, rather a question of how the money can be better spent or reallocated, across the continuum of care, to produce optimal results and achieve the overall goal of lower mortality and morbidity, as well as maintaining patient quality of life.
By mapping local variations in care delivery and outcomes, and comparing spending against those outcomes, healthcare providers have the opportunity to redirect their spending and improve value in cancer care all the way from prevention, including lifestyle changes not just screening for adenomas, through to end-of-life.
In a value-based world:
- patients are able to choose providers based on informed expectations of outcomes and the associated costs
- providers that deliver superior outcomes at competitive costs thrive, while others have the opportunity to improve or lose their position
- insurers negotiate contracts based on results and encourage innovation to achieve those results
- suppliers succeed by marketing their products on value, showing improved patient outcomes relative to costs
Although these goals are widely shared, healthcare systems have been unable to achieve them. Data from eight countries, including Australia, show that the correlation between spending and outcomes in bowel cancer is weak: countries with comparable spending levels can have varying survival rates; conversely, countries with similar survival rates can have very different spending levels. It’s time for health systems to adopt a more holistic approach to cancer care pathways, and to focus on patient outcomes across the entire continuum of care from prevention to end-of-life.
Implementing the Colorectal Cancer Standard Set
Bowel Cancer Australia is now looking toward the future: how can we ensure the capturing and reporting of patient outcomes across all Australian public and private hospital settings through the implementation of the Colorectal Cancer Standard Set?
Together with our ICHOM partners, our next steps are to work closely with data collection agencies and healthcare providers to spur development of the Standard Set, align registries and support pilot implementers.
In the long term, we aim to drive value by enabling international collaboration among healthcare providers and engaging stakeholders and governments to promote adoption and outcomes transparency through financial incentives and reporting requirements.
The Colorectal Cancer Standard Set was presented for the first time on May 17 at the 2016 ICHOM Conference at University College London, UK. Australian representatives on the Working Group include: Bowel Cancer Australia, Donna Bauer (Patient Representative and Bowel Cancer Australia Ambassador), Professor John Zalcberg (Monash University), and Professor Craig Lynch (Peter MacCallum Cancer Centre).
For a complete overview of The Colorectal Cancer Standard Set, including definitions for each measure, time points for collection and associated risk factors, visit www.bowelcanceraustralia.org.[hr]
Julien Wiggins is the CEO of Bowel Cancer Australia, a co-sponsor of the ICHOM Working Group. For more information, visit www.bowelcanceraustralia.org.
June is Bowel Cancer Awareness Month – Get Behind It
Each year, Bowel Cancer Australia dedicates the month of June to Bowel Cancer Awareness Month and raising much needed awareness and funds for bowel cancer. However, we cannot do it alone.
This year, Bowel Cancer Australia’s key message for Bowel Cancer Awareness Month is ‘Saving lives through early detection’ and we need everyone’s help to not only spread the word, but also to take steps to reduce their own risk.
Every member of the community can play a role in raising awareness of bowel cancer this June. One of the highlights of Bowel Cancer Awareness Month is Red Apple Day – held on 22 June 2016 – and you can find more information about how you can get involved on the Day or throughout the month by visiting www.bowelcanceraustralia.org