War On Cancer Co-Founders — Fabian Bolin and Sebastian Hermelin
In 2015, at 28 years old, Fabian Bolin was diagnosed with acute lymphocytic leukemia (ALL). While Fabian felt that his life and career were immediately put on “pause”, documenting his daily cancer experience in a blog became his coping mechanism. Through self-expression, Fabian found an outlet where he would be treated like the person he felt he was pre-diagnosis (and not like a victim or a cancer patient). Simultaneously, the blog provided Sebastian Hermelin, his best friend and support system, with valuable insight. Soon after publishing the first post, the friends saw the blog amass a following: tens of thousands of shares, comments, and likes. It became clear that so many others also sought out a space where they could share their vulnerable, encouraging and impactful stories.
And just there, an idea was born: to create a space where the “person is put back into the patient.”
Concurrently, Sebastian and Fabian identified the need for others also impacted by cancer to feel understood and less alone. There was an outpouring of support and appreciation for putting cancer out in the open; for destigmatising and normalising it. Simply knowing that the cancer experience is a shared experience was invaluable. And just there, an idea was born: to create a space where the “person is put back into the patient.” A place where everyone impacted by cancer can band together, grow, and create change.
Image courtesy of War on Cancer
War On Cancer has evolved into a social impact company with global ambitions, committed to improving the lives of everyone impacted by cancer. Today, more than 50,000 people connect, share and, if they choose, participate in cancer research through the War On Cancer app. The app addresses unmet needs such as providing a community when cancer causes social isolation, knowledge where there is a lack of resources, and a sense of purpose when life feels meaningless. At its core, War On Cancer looks to humanise cancer by redefining and destigmatising the many elements of the cancer experience. The platform is a place for people to speak candidly about the highs and lows and ins and outs of everyday life with and beyond cancer.
As the community has grown, the app has identified the need to democratise cancer care. There is a gap between the lived experiences of people impacted by cancer and cancer research. More often than not, barriers exist because of a lack of patient engagement and insight. By bringing people together, from all over the world, who have experienced cancer, War On Cancer has a unique opportunity to make patient experiences known to the life sciences sector. In doing so, making cancer research and care truly patient-centric.
To understand the patient-centric approach War On Cancer takes to improve the lives of those impacted by cancer, it is important to understand the way in which cancer affects mental health overall. To start, each individual’s mental health journey during cancer is, on some level, unique and there is no one-size-fits-all description or prescription. However, one experience that everyone affected by cancer can relate to is the experience of loss. Loss of career, or identity, the ability to have children, financial stability, self-worth, or simply loss of control. Combine loss with periodical extreme levels of stress and you have a dangerous combination which will inevitably take a toll on one’s mental health.
Data from a recent internal War On Cancer survey shows that 71% of participants believe their mental health has declined during cancer treatment and that 86% believe healthcare should refer people diagnosed with cancer to a therapist or psychologist. In this survey, War On Cancer invited key players in the cancer space to discuss these findings — among them, Hans Hägglund, M.D., Hematologist, Professor and National Cancer Coordinator for the Swedish Association of Local Authorities. Hans highlighted the power of our voice as the patient — that is, people going through cancer are in the driver’s seat over their cancer care but often feel like a passenger — things are going in a certain direction or happening to you but you are at a loss at knowing what to do about it. Asking “What about my mental health?” means you’re taking action and affecting the outcome of your mental health during and after cancer, which is huge in feeling agency over your own wellbeing.
When it comes to mental health and wellbeing, one size does not fit all.
Today, it is well established that a majority of cancer patients experience mental health issues and many countries have integrated mental health support as an aspect of their cancer care. However, studies still show that the support offered does not extend to all patients, nor is it sufficient for everybody. When it comes to mental health and wellbeing, one size does not fit all.
Despite numerous studies on the topic, the findings research has uncovered on how patients perceive their mental health and the support offered to improve it does not stay the same over time. Furthermore, the data may differ between groups of cancer patients depending on factors such as locality, age, cancer diagnosis and timing of diagnosis. War On Cancer takes this mission seriously to ensure data is up-to-date with relevant insights and feedback from people who experience cancer all over the world to improve our — and healthcare’s — knowledge and perception of the topics.
To fill these unmet needs, War On Cancer has created a digital, connected safe space where people can access information from experts, ask questions, connect with people, learn from others and share invaluable life experiences which can help countless others.
Rob, Tammy & Angela — Members of the WOC Community
What makes the platform special is not only the peer to peer, psychosocial support network, but the capability to amplify patients’ voices through “Health Studies” — a survey feature that allows members to provide insights about their experience with cancer through targeted surveys that contribute directly to cancer and market research. These insights, such as quality of life assessments or perceived quality of care, have the potential to improve healthcare across the globe and truly leverage the voice of the patient in cancer research. The feature enables stakeholders such as academia, healthcare providers and systems, insurance, life sciences and pharmaceutical companies to capture valuable insights directly from patients to help improve their understanding of the people they are trying to support to in turn improve their services offered which is value gained for receiving patients.
War On Cancer envision a world where a cancer diagnosis does not define who someone is.
By making it easy to directly contribute to cancer research, War On Cancer members are empowered to share their experience to improve the wellbeing of future cancer patients, but are also in control of what studies they wish to partake in. The platform makes it optional for members to participate, which in turn creates trust in the community and encourages a willingness to participate. For every study conducted in the app, the member understands which institution is behind the study and the purpose of the study. Through personal storytelling and direct contribution to research all in one place, people are empowered to help others and impact the future of cancer, which helps them feel a larger sense of belonging and purpose during and after their cancer experiences.
The intention here is to give patients the opportunity to heal by helping others and allowing them to build their sense of purpose and quality of life. The findings of these studies are then shared with trusted War On Cancer partners, which until now have had limited access to patient-reported outcomes (PROs), which come directly from the patient and their loved ones, and without the risk of erroneous interpretation by clinicians. This year, the platform has been successful in completing multinational projects with the likes of Pfizer Inc., AstraZeneca and the Karolinska Institutet in Sweden with a number of international projects in the pipeline for 2024.
War On Cancer is focused on uniting patient voices, empowering their members to have a genuine impact on improving the future of potentially life-changing patient care and cancer research by providing researchers with valuable real-world insights needed to drive innovation. There are 20 million people diagnosed with cancer, and millions more are impacted. War On Cancer envision a world where a cancer diagnosis does not define who someone is. Through the power of community, they are creating a movement where people are able to live with and beyond cancer on their own terms, free from stigma and alienation, and in a world that supports individual needs. War on Cancer helps people live better, together.
To learn more about War On Cancer, visit https://waroncancer.com/
