For the last 9 months, the DEDIS team has been collaborating with many different actors, including a local biotech startup, a blockchain dedicated to identity management, and an exciting and innovative funding partner.

This is an inside view on one of our most complex and widely reaching projects.

The Pitch

The future of healthcare lies in precision medicine, but this will require patient involvement in treatment decisions and new drug development. Recent progress in growing patient-specific organoids enables implication of patients in a never-before-seen dynamic fashion. This project aims at building a platform controlling access rights to patient data (genetic or generated from their organoids) in a privacy-conserving way compliant with future ethical regulations to enable new health practices.

Healthcare? Organoids? What?

The TWINs project (full title: “Linking patients to their physical and digital TWINs to facilitate Cystic Fibrosis (CF) diagnostics”) was brought to our lab by SUN bioscience, a Lausanne-based startup commercialising breakthroughs in personalised medicine made here at EPFL.

SUN bioscience had identified a coming risk to their industry: the fact that traditional methods of gathering and tracking a patient’s informed consent were not going to scale to the coming demands of precision medicine. They were looking for a partner who could apply the right tools from decentralisation in order for precision medicine to take off. They found that partner in Professor Bryan Ford at the DEDIS lab, who enthusiastically joined the project.

Together with our genetic sequencing partner, Synlab Italia, a consortium was formed to pitch the project to EIT Health.

Thanks to EIT Health’s funding, DEDIS was able to recruit and train an additional software engineer, Gaurav Narula.

We cannot do it alone

A durable digital identity is needed for a patient, and others involved in their care decisions, to be able to declare in a trustworthy way, “I give my consent that my clinical and genomic data should be used in this way”. And the entire lifecycle of consent (including possible future revocation, key rotations, and possibly key recovery) should be witnessed by multiple independent observers.

DEDIS determined that the project would be best served by relying on existing innovations in digital identity management, specifically the Sovrin identity management blockchain. DEDIS technologies like Calypso and Byzcoin would guard access to the patient data, but it would be the Sovrin blockchain that would allow patients to maintain control of their digital identities.

Open source goes both ways: take and give

Choosing to depend on a young technology like Sovrin and the Indy blockchain means we have the opportunity to apply the support from EIT Health to not only our own lab’s technologies, but to the open source projects we depend on. As a result, during the first 5 months of this year, we have already made the following open source contributions:

• aries-framework-go: update signature format
• aries-cloudagent-python: accept custom endpoints
• aries-framework-dotnet: numerous fixes
• aries-mediator: a new server capable of connecting mobile agents to one another
• aries-framework-javascript: numerous fixes
• rn-indy-sdk: numerous fixes
• transmart-core: added an API to retrieve modifiers
• glowing-bear: adding client-side support for filtering cohorts on modifier values

In addition, we have been busy adding features to the Byzcoin distributed ledger which makes it capable of taking transaction authorisations from the Indy ledger. These cross-chain authorisations are a challenging part of the project, which really test the suitability of these technologies for real-world use.

Acknowledgments

These open source software engineering contributions are part of an activity that has received funding from EIT Health. EIT Health is supported by the European Institute of Innovation and Technology (EIT), a body of the European Union receives support from the European Union´s Horizon 2020 Research and innovation programme.

About EIT Health

EIT Health is a network of best-in-class health innovators backed by the EU. We collaborate across borders to deliver new solutions that can enable European citizens to live longer, healthier lives. As Europeans tackle the challenge of increasing chronic diseases and multi-morbidity and seek to realise the opportunities that technology offers to move beyond conventional approaches to treatment, prevention and healthy lifestyles, we need thought leaders, innovators and efficient ways to bring innovative healthcare solutions to market. EIT Health addresses these needs. We connect all relevant healthcare players across European borders – making sure to include all sides of the “knowledge triangle”, so that innovation can happen at the intersection of research, education and business for the benefit of citizens. For more information visit: www.eithealth.eu