The leukaemia survivor building a storytelling network for people affected by cancer

When Fabian Bolin started feeling unusually tired in the summer of 2015, he initially put it down to his crazy schedule.

It had been 18 months since he left his career in investment banking to start afresh in acting. He had not taken a single day off in that time, instead racking up credits in Made In Chelsea and an online science fiction show called Kosmos. His exhaustion came at the same time as a summer visit to his hometown of Stockholm, so he powered through until the trip, ignoring the fact that he was sweating uncontrollably and feeling sore.

But when he got home and started struggling to breathe, he knew he had to get to hospital. The following day, after a series of tests, the Swedish doctors told him he had leukaemia.

“It felt like my life was ruined. Everything I had worked for was gone,” Bolin explains. “That was more traumatising than the fact I might die – which says something about my mindset at the time.”

On 5 July 2015, the day of his first chemotherapy session, Bolin shared his diagnosis on Facebook in a long post. “Please like and share this post amongst your friends,” he requested. “I am very keen on getting in touch with other people who have been or are being treated by (sic) leukaemia. I’ve always believed that a united group is stronger than standing alone.”

By the end of 2015, Bolin had started a blog called War On Cancer and registered the name as a company. It is now a social network for cancer patients and other people affected by the disease that has raised €844,000 (£729,000) in a seed round led by Karl-Johan Persson, the president and chief executive of H&M, and Stefan Krook, the founder of Kivra, a digital mailbox service. In 2017, the company received a grant from Microsoft worth $360,000 alongside an agreement to provide ongoing technical support. War On Cancer employs 14 people, split between Bolin’s native Sweden and Bosnia.

Bolin, who underwent 900 days of chemotherapy and is now in remission, hopes the network grows to a size so that community members can experience the same kind of support he did from the initial post on Facebook, which now has 12,000 shares and 2,300 comments. He received an outpouring of personal stories not just from strangers, but from close friends. “It helped me process in real-time what was happening and to normalise the situation for family and friends,” he says.

In September, War On Cancer launched as an app. So far, only a handful of people appear to be posting on the site, which looks a little like other social networks, with a newsfeed made up of posts from members, who can react and reply to one another. But the content of the posts is completely different from your average social network. In one, a father remembers learning, aged 11, that his lung cancer was back. In another, a woman posts a picture of the staples in her back after kidney cancer surgery and asks, “Is there anyone out there who has experienced something similar?” The community is moderated by people who have experience with cancer, who also post their own stories.

Next, Bolin explains, War On Cancer is focusing on expansion plans in the UK – including ambitious plans to advance the fight against cancer by collecting patient-reported data. He plans for War On Cancer to give patients the right to opt in to send their data to researchers, academics and pharmaceutical companies engaged in the fight against cancer. War On Cancer will store this data and, with patient consent, sell it for profit to these third parties.

“We thought we were trying to solve the mental health problem around cancer with stories,” Bolin says. “But we realised that if we managed to build a network on a global level, we have a unique opportunity to become a provider of patient-reported data. And this type of data is believed to be the future of healthcare.”

Patient-reported data is gaining increasing interest in academic circles as a way to look beyond the survival of patients towards a more holistic approach to their quality of life. More than half of 2,000 respondents to an Ipsos Mori poll commissioned by the Health Foundation in 2018 said they would be willing to share data with the NHS via a lifestyle app or a fitness tracker. Support was higher among younger age groups, but just under half of over 65s were open to the idea.

The Health Foundation says the problem is not gathering data, but putting the infrastructure in place to use consumer technology effectively. It found that health professionals often do not know what tech exists, whether it is safe to use or how to make the best use of data.

The NHS responded to this need in June by setting up NHSX, a unit to drive the digital transformation of healthcare, bringing together teams from the Department of Health and Social Care, NHS England and NHS Improvement. NHSX includes a library of medical apps that have been assessed and approved for use by health professionals and patients.

In October, Bolin met with NHSX, who took him through the processes used to assess health apps, so that he can prepare to get the War On Cancer app listed on the NHS app library. When asked about NHS policy around private companies selling private patient data for research and other purposes, an NHS spokesperson said War On Cancer is not proposing to sell NHS patient data to third parties, solely patient data from its own community.

As patient expectations around personalised care changes, researchers are exploring ways to put patients in control of their own data using blockchain and distributed ledger technologies. Using blockchain, patients could be remunerated if they consent to the use of their data by pharmaceutical companies or other third parties, possibly by some kind of token that could have monetary value or be exchanged for other healthcare services, according to researchers published in Frontiers in Medicine.

One startup called MedicalChain says participants will be compensated in tokens that will unlock the monetary value that their health data holds. “They will be more engaged with their health conditions,” the company says in a white paper, “and the next generation of cutting-edge medicine will be empowered.”

Data gathering is still in the design stage at War On Cancer, which is focusing instead on growing its social network to 10,000 people by the end of 2019. But Bolin is sanguine about selling patient data gathered through War On Cancer for profit. He says patients will get the satisfaction of receiving feedback about what their data is used for, in contrast with his own experience of being asked survey questions by young doctors while lying in hospital receiving intravenous drugs, with no idea what the data was being recorded for or how it would be used.

War On Cancer plans to store this data centrally. “All of this data is going to be intensely and heavily recorded,” he says. I ask him what would happen to patient data stored by War On Cancer if the start-up was acquired by a large investor, such as a pharmaceutical company.

“I understand that a lot of founders have that exit mentality, but I don’t think these founders are building businesses for the right reasons,” he says. “Because then it’s about money. It’s about money for all businesses, but for me, it’s also about impact. If I am able to materialise this vision completely, I will be the happiest person in the world.”