When Fabian Bolin was diagnosed with cancer his world fell apart around him – but from personal adversity grew an idea for an online platform where cancer patients could share their journey, support each other and, eventually, help inform clinical studies.
Four years after his diagnosis, the War on Cancer app was launched, providing a social networking-style platform for cancer patients, survivors and loved ones.
It provides a much-needed space to discuss symptoms, the challenges of cancer and, perhaps most importantly, offers a sense of community and comfort when it’s most needed.
Fabian, chief executive, and Sebastian Hermelin, co-founder of War on Cancer, are currently in discussions with the NHS to have their app included in the NHS App library and one day hope it will be prescribed as part of a patient’s cancer treatment.
They also hope to use data collated from the app to help inform clinical trials, particularly around patient experience and wellbeing.
In May 2017 Fabian, then 28, began feeling fatigued and suffered constant muscle aches.
Working in London as an actor, he decided to take a break and head 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 Fabian had acute lymphoblastic leukaemia, which had caused a tumour in his chest. He was given a 60-70% chance of survival.
“I had a tonne of questions immediately but they were not so much surrounding the specifics of cancer, they were more about life with cancer,” Fabian told Digital Health News.
“There was this inability to really invest in those human needs. I realised that I was not going to be able to get my answers from there so I needed to go elsewhere and my strategy was social media.”
Facing a gruelling 900 days of chemotherapy, Fabian decided after his first round of treatment to share his story on social media.
His first Facebook post was shared 13,000 by friends, family and strangers. That’s when he realised his experience could be used to help others.
Fabian, who is now in remission, started a blog called War on Cancer, which eventually grew into the networking app it is today.
“This blog really became a saviour for me from a mental health point of view,” he said.
“For me this whole thing about writing my story turned the aspect of going through cancer into something that allowed me to disconnect myself from it. Looking back at it all I think I was coping with the traumatic effects by sharing my story.
“It provided me with a sense of support. Through sharing my own journey I made a lot of cancer buddies who I am now friends with. It was a really effective way for me to deal with this shock and trauma.
“And it was a great distraction for me because it gave me something to do and think about which was still related to the fact I had cancer, but was stepping 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
Following Fabian’s diagnosis his closest friend, Sebastian, flew from London to Sweden to be with him. Together they worked on turning War on Cancer into an app and quickly realised the benefit of the data they could collect.
Sebastian, the chief operating officer of the company, explains how they plan to use targeted surveys to better understand patient experience and inform clinical research.
“Two years ago we realised there’s a huge gap between what the life sciences industry knows about patients and the information that is actually out there,” he told Digital Health News.
“We realised that by uniting patients on one global digital platform we’re actually in capacity of creating a new match.com for clinical trials.”
There are currently 37,000 active clinical trials globally, but some 60% won’t successfully find a new treatment due to a lack of patients willing to participate, according to Sebastian.
“We’ve started developing a data sharing module. It will be an in-app feature where we will be able to send out targeted surveys to members on our platform to help the life science sector better understand which patients could participate in clinical trials,” he adds.
“We’re not collecting any data as of now but we are working with the life sciences industry to understand this space because we are dealing with patient reported data, which is sensitive data.
“So we need to make sure 100% that what we do, we do it the right way, within the right legal framework and within the right ethical framework. It’s very much an opt-in system. We will never collect any data from patients without explicitly asking them if we have the right to do so.”
For each survey sent a patient, or user of the app, will be able to see why they have been sent it, who the user of the data will be and why they are being encouraged to participate.
“It became evident to us that even though everybody talks about the value of patient reported data nobody knows how to collect it,” Fabian adds.
“There’s a misconception that patient’s don’t want to share their data, but research points to patients wanting to share data as long as they understand why.
“If we can make patients understand how valuable they are to the progress of cancer research then we can turn data sharing into a value proposition, and that’s our whole aim with this.
“This is putting the power of dating sharing into 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 to download for iOS and Android.