For too long, ‘patient-centricity’ and ‘person centred care’ have merely been notional concepts that have not been reflected in the reality of patients’ lived experience.
By continually hiding behind these terms and the illusion of action they provide, we will continue to overlook the human beings behind the label of ‘patients’; the very people our health system exists to serve.
Now is the time to act; to face these moral and ethical questions and start answering them. To decide what cancer patients, deserve from our health system; from all of us as a society. What role they should – and are entitled to – take in their own care. And what needs to change to start truly valuing their lived experience in a real and tangible way.
With input from more than one thousand patients and carers – along with patient advocates, clinicians, and representatives from the pharmaceutical industry and patient organisations – this report aims to better understand the scale of the challenge we face in delivering the best person-centred care for Australian cancer patients. It explores how patients can be at the centre of their own care, well supported throughout their cancer journey, and have roles to inform healthcare decision making at the broader systems level. This will ensure that ‘patient-centricity’ or ‘person-centred-care’ is not just a catch phrase but a lived reality.
We owe it to the cancer patients of today and tomorrow to act now. Their lives depend on it.
The ‘Rights and Roles of Australian Cancer Patients’ Report was launched at CanForum 2021. The aim of the event was to ‘think outside the bubble’ and provoke new ways of thinking about how we can look beyond excuses to prioritise patient lives.
To help us do this, we were joined by four esteemed international thought-leaders who offered different perspectives about how we can shape the health system in line with values that more holistically reflect the needs of patients.
You can watch their presentations below:
Dr Amy Abernethy
Dr Amy Abernathy, an oncologist, is President of Clinical Studies Platforms at Verily Life Sciences – a research organisation owned by Alphabet Inc, which is also the parent company of Google. Amy is committed to figuring out how we can quickly understand what cancer treatments work, and for whom.
In this interview for CanForum 2021, she talks about how we can leverage real-world data in the service of rare cancers in Australia and beyond, and why this is so important.
Dr Vishal Bhatnagar
Dr Vishal Bhatnagar is an oncologist and the Associate Director for Patient Outcomes at the Oncology Centre of Excellence at the Food and Drug Administration (FDA) in the USA. His work focuses on incorporating patient experiences in the drug development process.
In this interview for CanForum 2021 with RCA’s Tiffany Petre, Dr Bhatnagar shares his vision for how we can better incorporate the patient voice into clinical trials and the importance of capturing this data today to benefit those who will have cancer in the future.
Dr William Smith
Dr William Smith has 25 years of experience in government and corporate roles. He is currently a visiting fellow in Life Sciences at Pioneer Institute, a Boston based ‘think tank’, where he writes about public policy issues impacting the life sciences industry with particular emphasis on the pharmaceutical industry.
In this interview for CanForum 2021 with RCA’s Tiffany Petre, he talks about how the cancer landscape has changed globally in the last 10 years, and what that means for patients, clinicians and key decision-makers including funders.
Professor Peter Clark
A consulting oncologist, Professor Peter Clark is the clinical lead for cancer drugs at the NHS, the UK’s publicly-funded healthcare system. His job is to try to get as many cost-effective drugs as possible into play for cancer patients, and to make the three billion pounds that the NHS spends on cancer drugs work as hard as possible.
In this interview for CanForum 2021 with RCA’s Amanda Ruth, Peter shares his views on the importance of the patient voice and provides a behind the scenes look into the value that decision-makers can gain by hearing firsthand from people with a lived experience of cancer.