By Tim Baker
Amid the usual, lively banter on Twitter among cancer researchers and medical specialists an interesting paper bobbed on my feed last week.
Entitled "Common Sense Oncology", the article published in esteemed medical journal The Lancet appeared to say the quiet part out loud, what patient advocates and others have been pushing for years.
"Oncology needs a recalibrated approach that is more patient centred and prioritises equitable cancer care. An approach that prioritises patients' needs with treatments that improve survival and quality of life, promotes informed decision making, and ensures these treatments are accessible to all patients," it began encouragingly. "Commercial interests, rather than patient interests, often drive cancer care and research, as seen by the mismatch between research spending on some cancers and their associated mortality and societal impact." Can I get a "hell yeah!" I thought more than once, as I read on enthralled.
With 36 co-authors from universities and cancer centres across Canada, the US, UK, Israel, NZ, Japan and Australia, this was clearly no radical fringe view, but a deeply researched, peer-reviewed and meticulously referenced call to action. The Common Sense Oncology website doesn't mince words and boldly declares: "We're starting a movement."
"The CSO Movement was initiated with a planning meeting at Queen's University in Kingston Canada in April 2023. This grass-roots movement is open to any clinician, health professional, patient, patient advocate, academic, editor, regulator, policy-maker or other stakeholder who is interested in promoting the values of high quality and compassionate cancer care," the website explains.
Central to the CSO mission is patient-centred care and equity of care. "CSO will promote interventions that measurably improve the lives of patients. We will promote effective treatments but we will also challenge interventions that might cause more harm than good," they write. "CSO will educate and empower the next generation of oncologists to push our field to do better for patients. We will work toward equitable access to affordable high-quality care. Improvements in the generation, interpretation, and communication of evidence will help close these gaps and move our field closer to a future in which a patient's outcome is not determined by where they live, what they can afford, or the strength of a marketing campaign. The CSO initiative's core mission is to ensure that cancer care and innovation is focused on outcomes that matter to patients rather than the commercial bottom line."
The problems they identify in the current state of cancer care are multitudinous and one key factor identified is: "the shift over the past few decades from predominantly publicly funded clinical trials designed to answer questions important to patients, to industry funded trials designed to achieve regulatory approval or commercial advantage. Often the goal of improving and lengthening the lives of patients and that of making a profit for commercial organisations are not concordant."
As an example, they point to the research and funding emphasis on developing new cancer medicines at the expense of investigating new approaches to surgery, radiotherapy, palliative care and prevention. "Surgery and radiotherapy cure many more patients than cancer medicines, yet receive much less funding for research and delivery of care. Moreover, in many parts of the world the majority of individuals diagnosed have incurable cancer, yet lack access to adequate pain relief and palliative care."
The CSO Vision is both simple and wildly ambitious: "Patients have access to cancer treatments that provide meaningful improvements in outcomes that matter irrespective of where they live or their health system."
To achieve this, they advocate for patient outcomes to be at the centre of every drug registration trial, for reporting of trials to be transparent and use language patients can easily understand and that patients receive clear communications around treatment options. "The only treatments that are registered, reimbursed, and recommended are ones that meaningfully improve patients' lives," the demand.
Among CSO's guiding principles are:
- Access to quality cancer care is a basic human right.
- Patient and public involvement is essential when making policy decisions
- Patients should expect that recommended cancer treatments meaningfully improve their survival or quality of life.
- Shared decision making between patients and oncologists should be based on patient values and grounded in evidence-based medicine and critical appraisal.
- Cancer treatments should be fairly priced for the context in which they are used.
- Equity in access to high quality care should be prioritized as much as innovation and new treatments.
- Comprehensive patient-centred cancer care includes timely integration of psychosocial oncology, survivorship, and palliative care.
You can read The Lancet article here: https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(23)00319-4/fulltext
And find out more about the Common Sense Oncology movement here: https://commonsenseoncology.org/
About the Author
Tim Baker is an award-winning author, journalist and storyteller specialising in surfing history and culture, working across a wide variety of media from books and magazines to film, video, and theatre. Some of his most notable books include "Occy", a national bestseller and chosen by the Australia Council as one of "50 Books You can't Put Down" in 2008, and "The Rip Curl Story" which documents the rise of the iconic Australian surf brand to mark its 50th anniversary in 2019. Tim is a former editor of Tracks and Surfing Life magazines. He has twice won the Surfing Australia Hall of Fame Culture Award.
Tim was diagnosed with stage 4, metastatic prostate cancer in 2015 with a Gleason score 9. He was told he had just five years of reasonable health left, but eight years on, at 58, he's still surfing, writing, and enjoying being a dad. His latest book, Patting the Shark, also documents his cancer journey and will be published in August. Tim will be sharing weekly insights into his journey to help other men who have also been impacted by prostate cancer.
