To reimagine lung cancer care we must listen to and learn from patients
30.11.20
During my time as a clinician in surgical oncology, my most striking experience is and was always how much our own view on matters of life, suffering and death biases us to what patients want - and how much we sometimes have to correct our assumptions when we take the time to really listen. Some of my most difficult moments in clinic were when I realized I probably had got it wrong and either done too much or couldn’t do enough for a patient with lung cancer. These moments, these discussions, these patients are without a doubt the most memorable moments in my career to-date, and led to a deeper understanding of the experience for people living with lung cancer and their caregivers.
In Europe, over 310,000 people are diagnosed with lung cancer every year. Mortality rates remain higher than breast, colon and prostate cancer combined.[1] Patients face huge variation in waiting times for diagnosis and the condition is significantly under-funded compared to other major cancers. With so many lives affected by lung cancer, there is an urgent need to promote change and drive advances in care.
Listening to and understanding the evolving needs of patients is critical to supporting these efforts. From drug development to clinical trials, it is so important that work to advance lung cancer care is firmly grounded in partnership with the patient community.
I’ve seen firsthand how Novartis’s Global Oncology Patient Insights Panels (GOPIPs) use critical feedback from patients and experts as the starting point for research and development projects. In my experience, GOPIPS not only help to accelerate efforts to find new treatment options, but also ensures that Novartis’s clinical trials are designed with the needs of patients in mind.
For those living with lung cancer, life doesn’t just stop – these are people with families, or jobs, and hobbies to enjoy. Developing a trial without this in mind is a sure-fire way to limit your chances of success. Only by listening can we understand lung cancer patients as individuals, united in their diversity by a horrendous disease.
When we convene patient panels together, we are able to collect invaluable information related to the everyday patient experience. For example, feedback from patients often raises very useful and detailed input into the number of examinations, preferences around biopsies and scans, the best ways to report side effects, and proximity of timings for different appointments to take blood or visit hospital. This includes insight into often overlooked details, such as the effect of a medicine on a patient’s ability to drive, which might be critical if they have no other options for transportation available to them.
Even more broadly, we can learn what patients really want from treatment, including insightful feedback about how much risk of side effects or other negative impact on quality of life patients are willing to take for prolonged survival.
I’m proud of Novartis’s continued commitment to working with patient groups across the world. Without patients’ critical insights, we wouldn’t be able to do the work we do.
[1] Lung Cancer Europe (2012) Lung Cancer: Our Diagnosis. https://www.lungcancereurope.eu/lung-cancer/. Accessed 30 10 2020.
