An interview by Richard Staines, journalist at pharmaphorum, with Jeanne Barnett, founder of the website CysticFibrosis.com and blockchain advocate, about this potential new paradigm for clinical research
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
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.
Our model is more ethical than current methods where patients are not compensated and sometimes not even informed their data is being sold
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.