Challenges & Choices is an ongoing series where we tackle the most difficult questions in cancer care. From finances to end-of-life care, we will explore how you can be prepared with practical information, ways to find emotional support, and stories from people who have been there.
“COMMON SENSE” is a title that evokes Thomas Paine’s pamphlet, published in 1776, that laid out the arguments for a revolution against Great Britain by American colonists.
Last summer, 36 researchers and cancer care professionals from around the world put their names on a similarly titled work, “Common Sense Oncology: Outcomes That Matter.” Published in the August 2023 issue of Lancet Oncology, the commentary promotes a revolution of its own to rethink current models of oncology care. Systems currently in place—from how studies on new treatments are designed to how doctors discuss treatment options with patients—have gotten too far away from a central goal of “meaningfully” improving patients’ lives, the authors argue.
“While some cancer treatments provide large benefits, many new approved treatments do not help patients live longer or better,” the commentary concludes.
Christopher Booth, corresponding author of the study and a medical oncologist and health services researcher at Queen’s University in Kingston, Ontario; and Aaron Goodman, co-author and a hematologist at UC San Diego Health, spoke to Cancer Today about the principles laid out in the commentary and what inspired them to take action.
CT: What are the problems within oncology and hematology that you’ve identified?
BOOTH: Aaron and I met and bonded over a shared concern for what our system can do better to improve outcomes for patients. This starts with recognizing that every day, we’re privileged to practice oncology and see amazing results from many of our treatments. But we’re also worried by the fact that some of our standard treatments have very small benefits and in fact might sometimes cause more harm than good.
GOODMAN: We all want our patients to live longer and live better. I just think somewhere along the way of our training and practicing, we get a little bit misguided. We do some stupid stuff in oncology, just like every other field. What do I mean by stupid stuff? We’ll give therapies that require patients to come in two or three times a week to the infusion center, that don’t make people live longer, proven by studies, and perhaps make them feel worse.
CT: What are the underlying causes of these problems?
BOOTH: In some ways our field has become so focused on exciting, innovative therapies and learning more about tumor biology that we’ve somehow lost the forest for the trees. We need to remember that we’re treating people and not just tumors.
There are three pillars: evidence generation, which is a body of work our team is doing to try and reform the design of clinical trials so that they measure outcomes that matter to patients.
The second pillar is evidence interpretation, which is really to help the next generation of oncologists be better equipped to dissect clinical trials. The third pillar is evidence communication, which is to learn how we can more effectively communicate these difficult issues to patients and families, and broadly to the public and policymakers.
CT: It seems that what constitutes a “meaningful” extension of life can be very subjective, especially for scared patients and families. Where should one draw the line?
GOODMAN: If a therapy prolongs life by two months, I would argue that’s somewhat marginal, but two months to that patient is maybe meaningful. So it’s hard to qualify what is marginal or not. But when we hear about these [treatment] “breakthroughs” and celebrate, I think most people aren’t thinking, ‘This is an additional two months, but with serious costs to society and serious toxicity to the patient.’ Or maybe the tumor is smaller for two months more, but they live the same amount of time.
BOOTH: When the majority of new cancer medicines approved by the FDA [Food and Drug Administration] do not help people live longer, but rather they control tumor growth on a CT scan for usually a few months, we think the bar has fallen too low and we can do better.
CT: Your commentary argues there’s also a trend of more research being funded by the pharmaceutical industry. What problems do you see?
BOOTH: In the 1970s and ’80s, most cancer clinical trials were funded by government grants to our academic cooperative groups worldwide. And they were clinical trials where the primary objective was to test a new treatment, to help people understand if they live longer lives. In the ’90s and early 2000s we began to see a shift, to the point where in the current era more than 90% of oncology drug trials are funded by the pharmaceutical industry and only a minority of trials are trying to measure whether the new treatment helps people live longer.
The majority of studies now are designed to detect improvements in what’s called progression-free survival, which in the absence of living longer, essentially means controlling tumor growth [as measured] on a CT scan for a period of time.
CT: What role do professional organizations that create clinical guidelines play? Shouldn’t they act as a safeguard?
GOODMAN: I sit on guidelines committees for the National Comprehensive Cancer Network (NCCN). There’s a guideline for each malignancy. The guidelines are good, but the problem is the goal of the guidelines is to make things available so insurance approves them. Ideally a guideline would say: What’s the best thing to do for the individual patient in front of you given the resources?
CT: What are the solutions? What are your goals?
BOOTH: We’re not promising we have all the answers. It’s going to be a long-term project. We frame it as a recalibration. One of the main reasons to make this kind of a conversation public was to raise awareness, to bring these ideas out of private conversations and hallways, and to normalize these conversations.
This started as a counterculture movement, but it’s rapidly gaining mainstream traction. We’ve been very, very pleased with the response from patients, policymakers, oncologists and academics literally all over the world.
This interview has been edited and condensed for clarity.
Readers can learn more about Common Sense Oncology at commonsenseoncology.org.
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