Lykke Hinsch Gylvin: Why we need to stop treating cancer – and start treating people
Lykke Hinsch Gylvin, Chief Medical Officer and Head of Global Medicine at Boehringer Ingelheim, posted on LinkedIn:
“With all the medical knowledge and cures we developed throughout history, there is one disease that we still dream of curing: cancer. About 1 in 5 people develop a cancer in their lifetime. Some may be afflicted with more treatable forms of the disease while others are impacted with cancers that have lower rates of effective treatment. That does not make any type of cancer “less evil” than others – because for the individual receiving a cancer diagnosis, it is always a harsh blow.
Access to cancer treatment remains unequal and all cancers are different, so every patient will go a different path. But one thing is always the same: the life of a newly diagnosed patient will change drastically, immediately. With healthcare providers increasingly using “patient outcomes” as measure of success, it becomes ever more important to focus on the person who has been diagnosed – instead of just their diagnosis.
The current state of cancer treatment
Once diagnosed, patients will need to navigate an environment saturated with complex and dynamic science about their disease, with information coming in from multiple sources, some of which may not be credible. All patients will have to make a choice about the role they play in their own care, and this choice will impact their futures. At the same time, the scientific information they find will usually not have been designed for them. It is thus not tailored to their level of knowledge nor their emotional circumstances. Patients are likely to feel overwhelmed, like a mere passenger in a complicated treatment pathway.
It is possible that sometimes we underestimate the extent to which patients want and are able to take a leading role in their own health [Coulter 2016] and patients may be unaware of decisions being made on their behalf. [McAlpine 2018]
Many people living with cancer share a powerful desire to learn as much as possible. But many are held back due to several factors, one of which is their [HB1] fears of taking up too much of a healthcare professional’s already limited time, or worrying they did not know the ‘right’ questions to ask.
As patient populations and treatment options grow and diversify, [Elkefi 2023] I’d like to reflect on how far we’ve come, and what more we can do.
Introduction to patient-centered cancer care
There were 19,976,499 new cases of cancer around the world in 2022. [GCO WGO] There is a vast array of treatment options – from different types of chemotherapy to radiation, surgery, and immunotherapy. Yet, heartbreakingly, almost 10 million people died of cancer in 2022 and long-term remission only occurs in 15 to 20 % of cases.
Looking at these figures, it is a given that almost every person on earth will be affected by cancer in some way. If they do not develop the disease themselves, someone close to them will. Coming to terms with a cancer diagnosis and treatments that follow, impacts each person differently. The emotional and psychological effects of diagnosis can affect a patient’s ability to retain information about their care during this vulnerable time. Moreover, each person has their own preferences when it comes to how and when they like to receive any information. It’s crucial we consider and honor these unique circumstances.
For our already time-poor healthcare professionals, however, there are of course barriers to making this an everyday reality. But, as we’ll see, the benefits of increasing a patient’s involvement in their care can actually yield benefits for oncologists as well.
Benefits of patient empowerment in cancer care
Studies show that establishing good communication between healthcare professionals and people living with cancer results in numerous positive outcomes such as:
Interestingly, patient-centered communication and care can also lead to improvements in adherence (the degree to which patients follow medical advice from healthcare professionals), management of chronic diseases, and even health outcomes. [Elkefi 2023]
It starts with RandD: Implementing patient-centered practices
Exploring patients’ preferences as early as possible is vital. It ensures they can take their preferred role in shaping their personalized cancer care, [Noteboom 2021] and accommodates insights from them, their family, their medical history, biology, and social factors. For me, this starts in RandD. Involving patients when optimizing trial design, endpoints and feasibility can help shape research, empowering patients to influence the healthcare systems responsible for treating them.
Another important tool for patient-centered care are lay summaries. They translate complex data from a clinical study into information that more people can access and understand. This enables more and more patients to access the latest available information when making treatment decisions.
For patients and carers across the world, concise summaries tailored to their understanding (and often written with the help of patient organizations to ensure maximum insight from patients) can help answer questions they may have about treatments and encourage them to become partners when it comes to decisions about their own health.
At Boehringer Ingelheim, we partner early on with people living with cancer and their caregivers. We walk them through the development process, with the goal to deliver life-changing and best-in-class treatments that seek to keep families together. Because with a disease as life changing as cancer, we are driving the need to think about the person as a whole, and not just treating the cancer. That also means making sure they have social support and continue to take care of their body with physical exercise and good nutrition.
The future of cancer treatment
The benefits of a person-centered approach to cancer care are clear, for patients and their healthcare providers. And while there is still work to be done to bring this approach to more people more consistently, at the heart of the matter is the fact that we can’t get there without patients. For me, the act of robust and early patient engagement in healthcare will be our most powerful tool in achieving personalized and patient-centered care for all.
This approach is instrumental in helping us achieve our aspiration – to transform the lives of people with cancer by delivering meaningful advances, with the ultimate goal being to cure a range of cancers. Our generational commitment to driving scientific innovation is reflected by our robust pipeline of cancer cell-directed and immuno-oncology investigational therapies, as well as the smart combination of these approaches. Simply put, for Boehringer Ingelheim, cancer care is personal – today and for future generations. Our dedication to person-centered care is at the heart of our mission to meet and exceed the needs of our patients.”
Source: Lykke Hinsch Gylvin/LinkedIn