Common Sense Oncology movement focuses on outcomes that matter most to patients
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An international group of oncologists and patient advocates has launched a movement to establish a more patient-centered approach to cancer care and research.
The group outlined guidelines for the movement, known as Common Sense Oncology, in a paper published in The Lancet Oncology.
“Many elements of the cancer care system work well, and many treatments we give are truly transformational and really help people,” Christopher Booth, MD, a medical oncologist and director of the division of cancer care and epidemiology at Queen’s Cancer Research Institute, told Healio. “However, we’ve recognized that in the last decade, there has been a shift toward pursuing new treatments that often have very small benefits and significant side effects. This movement is grounded in the belief that we can do better for patients. They deserve better.”
Booth and co-author Aaron Goodman, MD, a hematologist/oncologist at Moores Cancer Center at UC San Diego Health and assistant professor of medicine at University of California, San Diego, spoke with Healio about the movement’s mission, the three pillars of its action plan, and the desire to ensure that it includes all patient advocates, community members and stakeholders in oncology care.
Healio: What motivated you to start this movement?
Booth: A group of us who have been looking after patients with cancer for many years recognized that the field of oncology had lost its way and wasn’t doing a good job of distinguishing to the patients, the public and policymakers that some of our treatments are incredibly effective, some are quite effective (but not transformational) and some have very small benefits and may cause more harm than good. We wanted to create a community where we could have these sorts of difficult conversations and collectively work on solutions to improve care for patients. This led to an initial planning meeting at Queen’s University in April. We brought together 30 experts from around the world — oncologists, academics, journal editors and patient advocates — to talk about these issues and devise a strategy going forward. Ultimately, we decided to create a movement that would recalibrate cancer care toward the outcomes that matter to patients. Patients with cancer want to live longer lives and feel better. We think that it’s important to advocate for treatments and systems that promote these priorities.
Healio: What is the movement’s mission?
Goodman: We’re focusing on three core issues, which we call our pillars. One is evidence generation. We want to figure out ways to generate more robust evidence that benefits patients and reports improvements in quality of life — things that matter to patients. Pillar two is evidence interpretation. For many of us, our training did not equip us to accurately interpret clinical trial data to figure whether a treatment is going to help the patient in front of us. Pillar three is evidence communication, which is how we report findings to the public. Whether it’s through the press or social media, it’s important that we portray what we are doing in oncology in accurate ways, so patients can truly understand and make informed decisions.
Healio: Your paper calls for changes in the way clinical trials are conducted. What changes do you recommend?
Booth: We recognize that a substantial proportion of our really good treatments have come from clinical trials done in partnership with the pharmaceutical industry. Those are valued relationships and partnerships. We’re not suggesting that the cancer research system should have no relationships with the pharmaceutical industry. The problem is that the current environment is completely dominated by the pharmaceutical industry. Our research team published a paper a couple of years ago showing that more than 90% of clinical trials testing new cancer medicines are funded by the pharmaceutical industry. The pendulum has swung too far. We need to have a reinvestment in clinical trials led by academic cooperative trials groups, where the primary mandate is to identify treatments that measurably improve outcomes for patients. The primary mandate for pharmaceutical companies is to generate profits for their shareholders. I believe the people who work for pharmaceutical companies also want to improve things for patients, but these two competing priorities might not always be aligned. Common Sense Oncology is a movement that will speak honestly about these challenges and advocate for clinical trials that measure endpoints and look for effect sizes or magnitudes of benefit that matter to patients.
Healio: Should patients be given a clearer understanding of the magnitude of benefit some of these drugs confer?
Booth: Our group has done quite a bit of work in this space. We found that there is no evidence that most new cancer medicines approved by the FDA, recommended in the guidelines and used in clinical practice help people live longer or live better lives. Most new medications are approved based on progression-free survival, which measures how long it takes on a CT scan before the cancer starts to grow. There are some circumstances where that measurement is closely correlated to how long someone lives, but most of the time it is not. So, we have a scenario where most new cancer medicines do not help people live longer, yet they certainly have side effects that can make people feel quite sick. There is a disconnect between the reality of new cancer medicines and what the patients and the public believe, based on the narrative of the current cancer system.
Clearly, some cancer treatments are transformational, and, in fact, many of our old treatments are effective in increasing cure rate and helping people live longer, even when they can’t be cured. We have some new treatments that also provide large benefits, but we’re worried we are on a dangerous path, with a focus on smaller and smaller benefits. We don’t think this is in the best interest of patients. They deserve better, and we can do better.
Healio: Is there anything else you’d like to mention?
Goodman: On top of the cost and side effects associated with these treatments, a good deal of time is invested in treatment, as well. Some treatments require infusion center visits two to three times weekly, or weekly infusions where they have to spend half the day or a full day in the infusion center.
We also need to educate the future generation of oncologists, patients and patient advocates. We don’t want to be seen as outsiders — we want to be taken as mainstream. We want to work with pharmaceutical companies. We all want the same thing: for our patients to live longer and better. We are just recognizing that we’ve gotten a bit off track and we’re trying to redirect and provide some counterbalance in the current state of affairs in the field. We want future trainees and oncologists to speak up on these matters and feel comfortable doing so.
Booth: We see patients and patient advocates as our partners in this movement, and we’ve been very intentional in our planning stages to involve our patient advocate colleagues. Common Sense Oncology is an open, inclusive movement anyone can join. The response has been tremendous. We’ve had oncologists, patients, researchers and policymakers from countries all over the world writing to us within a number of days, enthusiastically embracing the principles of Common Sense Oncology and wanting to know how they can get involved and contribute.
Goodman: Anyone is welcome to join; this is not just an organization for physicians. We would be thrilled to have more patients and members of the public join us. We’ve also had more than a million impressions on social media. We’ve had patients retweeting that they’ve been waiting for something like this — it’s very gratifying. At the end of the day, we want to improve outcomes for patients — that is what really matters.
References:
- Booth CM, et al. Lancet Oncol. 2023;doi:10.1016/S1470-2045(23)00319-4.
- Del Paggio JC, et al. JAMA Oncol. 2021;doi:10.1001/jamaoncol.2021.0379.
For more information:
Christopher Booth, MD, can be reached at Queen’s Cancer Research Institute, 10 Stuart St., Kingston, Ontario K7L,3N6, Canada; email: christopher.booth@kingstonhsc.ca.
Aaron Goodman, MD, can be reached at Moores Cancer Center, 3855 Health Sciences Drive, San Diego, CA 92037; email: a1goodman@health.ucsd.edu.
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