When Fabian Bolin was diagnosed with cancer, his world collapsed around him – but out of personal adversity arose the idea of ââan online platform where cancer patients could share their journey, support each other and possibly help inform clinical studies.
Four years after her diagnosis, the War on Cancer app was launched, providing a social media-like platform for cancer patients, survivors and their loved ones.
It provides a much needed space to discuss the symptoms, challenges of cancer and, perhaps more importantly, provides a sense of community and comfort when it is needed most.
Fabian, managing director, and Sebastian Hermelin, co-founder of War on Cancer, are currently in talks with the NHS to have their app included in the NHS app library and hope one day that it will be prescribed as part treatment of a patient’s cancer.
They also hope to use the data collected from the app to inform clinical trials, particularly with regards to patient experience and well-being.
In May 2017, Fabian, then 28, began to feel tired and suffered from constant muscle pain.
Working in London as an actor, he decided to take a break and return home to Sweden, hoping his symptoms would subside. They didn’t and weeks later he woke up with severe pain in his chest, struggling to breathe.
Tests revealed that Fabian suffered from acute lymphoblastic leukemia, which had caused a tumor in his chest. He was given a 60-70% chance of survival.
“I immediately had a ton of questions, but they weren’t so much about the specifics of cancer, they were more about living with cancer,” Fabian told Digital Health News.
âThere was this inability to really invest in these human needs. I realized I wasn’t going to be able to get my answers from there so I needed to go somewhere else and my strategy was social media.
Faced with 900 grueling days of chemotherapy, Fabian decided after his first round of treatments to share his story on social media.
Her first Facebook post was shared to 13,000 by friends, family and strangers. It was then that he realized that his experience could be used to help others.
Fabian, who is now in remission, started a blog titled War on Cancer, which ultimately became the networking app it is today.
âThis blog has really become a savior for me from a mental health standpoint,â he said.
âFor me, this whole story of writing my story turned the aspect of going through cancer into something that allowed me to disconnect from it. Thinking about it all, I think I was dealing with the traumatic effects in sharing my story.
âIt gave me a feeling of support. By sharing my own journey, I made a lot of cancer buddies who I’m now friends with. It was a really effective way for me to deal with this shock and trauma.
âAnd that was a big distraction for me because it gave me something to do and think about that was always related to having cancer, but coming out of that fact.
“It wasn’t just me sitting in a room thinking ‘I’m going to die, I’m going to die’.”
The importance of data
After Fabian’s diagnosis, his closest friend, Sebastian, flew from London to Sweden to be with him. Together they worked to turn War on Cancer into an app and quickly realized the benefit of the data they could collect.
Sebastian, the company’s COO, explains how they plan to use targeted surveys to better understand the patient experience and inform clinical research.
âTwo years ago, we realized there was a huge gap between what the life science industry knows about patients and what information is actually available,â he told Digital Health News.
âWe realized that by bringing patients together on a global digital platform, we are actually able to create a new match.com for clinical trials. “
There are currently 37,000 active clinical trials worldwide, but about 60% will not successfully find a new treatment due to a lack of patients willing to participate, according to Sebastian.
âWe have started to develop a data sharing module. This will be an in-app feature where we can send targeted surveys to members of our platform to help the life sciences industry better understand which patients could participate in clinical trials, âhe adds. he.
âWe are not collecting any data at this time, but we are working with the life science industry to understand this space as we are dealing with patient reported data, which is sensitive data.
âSo we have to make 100% sure that what we do, we do in the right way, in the right legal framework and in the right ethical framework. It really is an opt-in system. We will never collect data from patients without asking them explicitly if we have the right to do so. “
For each survey sent, a patient, or application user, will be able to see why they received it, who the data user will be and why they are encouraged to participate.
âIt has become obvious to us that while everyone is talking about the value of patient-reported data, no one knows how to collect it,â adds Fabian.
âThere is a misconception that patients don’t want to share their data, but research indicates that patients want to share data as long as they understand why.
âIf we can make patients understand how valuable they are to the advancement of cancer research, we can turn data sharing into a value proposition, and that’s our whole purpose with that.
âIt puts the power of meeting sharing in the hands of our members. “
Fabian and Sebastian plan to start piloting targeted surveys in the first half of 2020.
The War on Cancer app is available for download for iOS and Android.