Talking about a blockchain revolution

Blockchain could revolutionise the way patients think about their clinical data, allowing them to control who uses it and receiving financial rewards for participating in trials. Richard Staines spoke to Jeanne Barnett, founder of the website CysticFibrosis.com and blockchain advocate, about this potential new paradigm for clinical research.

It’s easy for patients with serious diseases to feel like they have been hit with a perfect storm, particularly in the US where they must often pay for part or all of their care for themselves, as well as contending with the debilitating symptoms of their condition.

Finding ways for patients with diseases such as cystic fibrosis (CF) to make a living for themselves is therefore a priority for families who are under pressure to make ends meet, as well as deal with a loved one who is faced with condition that has serious implications for their daily lives.

While a new generation of drugs is offering fresh hope for CF patients, CysticFibrosis.com founder Jeanne Barnett argues that blockchain could help patients and families overcome some of the financial difficulties that can cause serious problems with everyday life.

For the uninitiated, blockchain ensures that data is original, and not tampered with.

Under blockchain records are kept and maintained across a whole network of computers and this database is jointly managed across the entire system. A public blockchain has “decentralised governance”, which means everyone agrees on his own whether or not to support the updates.

While it was initially used in cryptocurrencies such as BitCoin, the principle of blockchain can be used to allow patients to give access to anonymous medical information for the purpose of clinical trials, and in return allow them to be paid for doing so.

According to Barnett, this could create a whole new paradigm for conducting clinical trials where patients are engaged with research and are financially rewarded for trialling cutting-edge drugs.

The website and its community are working on this new way to use blockchain to incentivise patients to take part in clinical trials and better manage their data.

Barnett told pharmaphorum: “When we first began our explorations of the emerging world of blockchain, it seemed like an epiphany. Finally, patients would have the identity and dignity they deserved, that really should be afforded to all of us. Our data becomes our self-sovereign identity.”

She added that the cystic fibrosis (CF) patient community is ideal as a test-bed for this technology, given that many of the people with the disease are already quite tech-savvy.

An early internet entrepreneur, Barnett bought up the domain CysticFibrosis.com in the nineties and was amazed at the speed at which a community sprang up around the site.

People with the disease are often unwilling to meet up as they can cross-infect each other with diseases that they are vulnerable to because of their condition.

Therefore, the internet provided a way for patients to build a community and share ideas without risking physical contact.

Barnett said that CF patients have continued to be avid users of internet technology since then as a means of communicating with each other and learning about their disease.

The emergence of blockchain could pique the interest of a community that is already highly engaged with the internet and related technology and devices, argues Barnett.

“The problem with cystic fibrosis is that patients can’t be together. They don’t want to go to their centres because it could be that they would catch different germs. Going to a centre is very dangerous for them.”

“This community is a perfect candidate for such a big disruption and they are ready to use this technology,” she said.

“We are trying to create a platform that handles all their medical information, and lifestyle and mood,” Barnett added.

According to survey of 1,200 CF patients conducted by Barnett, 68% of patients said they are prepared to share data in return for money.

Of these around 80% said they are happy to share data on medication use, CF genetic test results and spirometry results, although far fewer are prepared to share full genome sequencing data.

Barnett said that patients are keen to share genetic details about their disease, so that researchers can gain further insights into more than 2000 mutations that can lead to CF.

It could also be used to provide real-world evidence about how medications are working in patients with the disease.

Because the patients will be engaged with the trial, Barnett said she expects drop-out rates to be lower.

“I imagine that it will cause adherence. More people will become adherent if they feel that what they are doing matters.”

She said: “This is a key first step to change the relationship between our CF community and industry from the current one-sided model to a partnership, where patients are woven into the fabric of data monetisation.”

Barnett is unconcerned that the technology could create a ‘digital divide’ between CF patients who have access to phone and computer technology, and those that do not.

Their desire to stay separate from other patients means that a blockchain-based trial, where most of the readings are taken in a patient’s own home, would be highly advantageous to all involved.

Patients themselves have suggested that the system could be used to fund IT equipment for their home, Barnett added, who said it would work “in pharma and hospitals’ favour” to structure trials in this way.

The technology is in the process of being validated by an advisory board including clinical research academics, patient advocacy groups, standardisation bodies and pharma companies.

Barnett concluded: “Our system does not replace clinical trials. It does improve other data collections such as patient registries and real-world evidence studies.

“We believe that our decentralised model is actually more ethical than current methods where patients are not compensated and sometimes not even informed their data is being sold for the benefit of others.”

The patient-centric approach taken by CysticFibrosis.com means that Barnett is confident about the potential of the new blockchain-based clinical trial model, and this opportunity to revolutionise the way people engage with clinical trials.

It could be such a fundamental shift that it reminds Barnett of her first days as an internet entrepreneur two decades ago in the era of dial-up.

Barnett said: “The audacity of pursuing and defending this project makes me think back to the beginning of the internet, daring to allow a patient community to form.”

About the interviewee

Jeanne is a well-versed patient advocate with a pioneering sense of the web’s potential to improve healthcare. Through her broad based experience as a math and computer science teacher and healthcare website developer, she created the first and largest global social media cystic fibrosis patient community in 1996. She has recently chaired and/or delivered presentations at Digital Pharma East, PanagoraPharma, the World Orphan Drug Summit and eyeforpharma. Jeanne won the Patient Centricity Award in 2011 from pharmaphorum. She is also a founding member of the Aurora Project.