Empowering patients to take ownership of their health data using blockchain
When Iris Depaz signed up for an EMBA at IMD she was excited about meeting people from a variety of nationalities. “What I didn’t count on was the diversity of the backgrounds of people,” says Depaz who is Country Medical Lead Australia for Sanofi.
It was a conversation during after-class drinks with fellow EMBA participant Bjørn Leth Erichsen, a trained corporate lawyer with a specialist understanding of the EU’s General Data Protection Regulation (GDPR), that sparked an idea about how to empower patients to take ownership of their healthcare data.
“I don’t think I would have ever evolved what we are doing with our firm if it hadn’t been for that thought-provoking conversation with Bjørn,” she says.
Separate to her job at Sanofi, Depaz is now working as co-founder and chief of patient advisory at Quaefacta, which aims to give patients control over their own health data by using blockchain technology and AI to develop a personalised health record. Depaz got to know the company’s founder Lea Dias as part of her EMBA case-writing coursework. At that time Quaefacta had successfully used blockchain to track and trace medications and speed up supply delivery. Through the case-writing Depaz and Dias established the basis to continue to develop patient centric solutions and incentivisation opportunities. Since the program ended, they have collaborated with Erichsen, who is the CEO and Co-Founder of the Sixtus Grpup a Danish legaltech startup around data management and data protection, to help develop Quaefacta’s purpose of providing a single source of truth where the patient owns their data and has access to all their medical records.
The first challenge will be obtaining access. Patients’ data is legally owned by doctors and health care institutions. Moreover, it is conventionally stored across a patchwork of legacy systems and databases, or in some cases, on scraps of paper, making it hard for individuals to have control over their own health history.
“You have an iPhone and the world of information at your fingertips, but you don’t know where your health records are which is crazy,” says Depaz. “There should be some kind of digital record, which we believe should be managed by the patient.”
A further challenge is security and how to prevent electronic health records from being hacked, as well as stopping errors from being introduced or changes that are not approved by the doctor.
“This is where blockchain really helps, because every time you edit something there is a hash added and you can track changes and editing and so on,” says Depaz.
With pharmaceutical companies increasingly conducting real-world evidence studies on the benefits and risks of their products by collecting data from routine clinical practice, it is more important than ever that patients know how and where their data is being used.
Depaz says the technology will enable patients to be notified every time a company wants to use their data for a real-world evidence study, with the option of agreeing or declining.
Another advantage is that it lets patients be rewarded for sharing their data.
“Companies accessing the data should be paying the patient or individual, not just some centralised data provider like Google or Apple. They shouldn’t be the only ones profiting from this,” she says.
“A lot of people are actually very happy to consent to their data being used for altruistic reasons, but I think that with technology that allows people to be rewarded, there is some level of incentivization,” adds Erichsen who advises Quaefecta on ePrivacy and GDPR.
Both are united by a strong desire to give people greater transparency over their own data and at the same time are exploring how to translate this into a commercial business through Quaefecta.
It is no easy task to navigate the multitude of different legal systems and data laws across geographies and jurisdictions. Erichsen sees the GDPR system as a blueprint for other regions given its aim of minimizing the amount of data which is stored and to enable ‘privacy by design’ and ‘privacy by default’.
While neither of them had a traditional business background, they credit their EMBA with giving them the confidence to take their careers in a new direction.
Erichsen worked in-house as a legal counsel for the Adecco Group and Sitecore Corporation and signed up for the program to hone the business case and entrepreneurial skills needed to run his own company. Depaz started her career in academia as a medical researcher before working at pharmaceutical giant Sanofi across several roles in Australia and France.
“IMD has given me the confidence to take the next step into commercial which I frankly would not have wanted or dared to take before,” she says.
For Erichsen, the program gave him the foundational knowledge to grow his business and the confidence to step outside of his specialist comfort zone. He even finds himself enjoying making interior design decisions for SIXTUS’s new offices.
“As a lawyer you are trapped in the box; you are trained to see the framework of law and it’s quite limiting. Participating in all these different sessions such as Strategy and Cultural Transformation helped me see a broader picture, and after leaving IMD, I am not afraid of tackling various problems.”