Data Lake: A consent-based system to share medical information

26 Sep 2022

Co-founders Wojciech Sierocki and Ligia Kornowska. Image: Data Lake

The Polish start-up hopes to address what it considers ‘one of the biggest roadblocks’ to innovation in modern medicine.

Progress in healthcare and medicine can require a lot of data. However, health data is among the most valuable and the most private information anyone can have and therefore use of it is heavily regulated.

This means that access to high-quality and representative medical data by researchers is often limited and fragmented. This is the challenge that Data Lake is hoping to solve.

Founded in 2019 by medical doctors Wojciech Sierocki and Ligia Kornowska, Data Lake is an EU-funded start-up creating a global medical data donation system based on blockchain technology, with privacy and informed consent as fundamental pillars.

Sierocki is a serial entrepreneur who led a telemedicine start-up in Kenya and built a digital patient pathway platform for private healthcare. Kornowska is the managing director of the Polish Hospital Federation and a thought leader in AI in medicine. Both have featured in the Forbes 25 Under 25 list.

Sierocki, who is the company’s CEO, said that limited access to medical data is “one of the biggest roadblocks in Europe to medicine and healthcare jumping light years ahead”.

“Our system empowers people to give or revoke consent to the usage of their medical data in a safe, easy and private way, while providing large datasets that will revolutionise scientific research and medical studies,” he told SiliconRepublic.com.

“Our start-up is a direct response to recent legislative changes and initiatives coming from the EU such as the General Data Protection Regulation (GDPR) and the Data Governance Act (DGA) – regulations that open up a legal framework for the ethical usage of data to jump-start European innovation.”

To incentivise participation in the company’s data-sharing ecosystem, Data Lake has a rewards-sharing model for donors and hospitals, which distributes the benefits from the purchases of medical data by researchers among stakeholders.

“We saw tokenising the project, via a crypto utility token, as the best way to power this new cross-border medical data economy,” said Sierocki.

“In many countries, financial incentives for the donation of medical data raises serious legal concerns, in the same way you can’t sell your bone marrow or organs. Service benefits and other non-monetary rewards, however, are broadly not considered to be an issue.”

For this reason, Sierocki described Data Lake as a “Web2.5 company” rather than fully Web3.

“We apply the latest technologies such as blockchain when they’re the best tools for the job, but the reality is that some industries and demographics simply evolve more slowly or cautiously than others,” he said

“‘Being on the cutting edge’ is a buzz-phrase that gets thrown around a lot, but leveraging emerging technology should be done because it benefits your business operations or improves customer experience, not just because it sounds nice in your pitch deck and communications.”

‘Consent-based data innovation is not just permitted but actively encouraged’
– LIGIA KORNOWSKA

The demand for medical data is far from new, and as AI and machine learning are playing increasingly important roles in the healthcare industry, data is becoming even more critical.

However Kornowska, who is chair of the Data Lake board, said it is the legislative changes that have come through in recent years that have made such a system possible.

“With changes made and proposed in the GDPR and DGA legislation – as well as the upcoming European Health Data Space (EHDS) framework – data altruism and consent-based data innovation is not just permitted but actively encouraged by the European government,” she said.

“We’ve identified at least five stakeholder groups who could benefit from participating in the altruistic medical data economy, and our rewards-sharing model means that everyone – from the general public to hospitals and nonprofits – can be both incentivised and rewarded for a global data donation system.”

For the researchers who want to access medical data, a consent-based system like Data Lake’s means they can gain access to ethical data they are legally allowed to use.

Kornowska added that enabling data donation internationally could provide a wider representation of demographics, which could reduce bias in medical data.

“We hope to set a standard for international data donation and democratise access to medical data, while proving that privacy and donor consent can – and should – play vital roles in any such system,” she said.

“Aided by AI and machine learning, medical science is already doing some incredible things when it comes to diagnosing and treating illnesses. With the right datasets from our data donation programme, we truly believe that we could advance the field tremendously in a very short space of time.”

Data Lake’s system uses a public blockchain to record the giving or revoking of consent from people and patients who want to donate their medical data to scientific research.

Sierocki said the public, open blockchain acts as “a source of truth for donor status”, meaning donors don’t have to trust a company’s private database and can instead check and change their status at any time.

“It provides patients with ownership and direct control over their data, and information regarding any data operations,” he said.

“Once consent is given, we interface with their healthcare facility to receive their electronic healthcare data for complete anonymisation, before aggregating it into the larger datasets that researchers need.”

‘We believe that there are no shortcuts when it comes to our methodologies’
– WOJCIECH SIEROCKI

In the last few months, Data Lake has seen a huge acceleration in its operations. Development of the data donation system is in the final stages before a full public launch in Poland.

The start-up has also secured partnerships with more than 20 hospitals and patient organisations, including EIT Health.

“We also have the first data orders waiting for system launch, requested by more than 20 data start-ups and research groups,” said Kornowska.

“With our partnership infrastructure in place and growing demand from researchers, we are primed for expanding into other European countries in the near future, and beyond in the coming years.”

The start-up has also just closed its seed funding round and is talking to VC and investment firms that are compatible with its values, but Sierocki said the team is cautious about investors due to the nature of the business.

“Conscious of the fact that a major aspect of our project is social benefit, we have been selective when it comes to our advisers and investors, aided by the fact that we’ve had a lot of interest during our strategic round,” he said.

“As we plan to quickly move from the proof-of-concept stage to scaling into the rest of Europe, we are also seeking additional EU funding through their EIC accelerator programme.”

Because the platform centres around medical data, one of the biggest challenges the founders face is navigating the complex and ever-changing regulations around data usage and privacy.

Sierocki said this has required them to carry out more rigorous checks and balances than is typical of a start-up. “We believe that there are no shortcuts when it comes to our methodologies,” he said.

“While born of necessity, this rigorous approach has become a key factor in why we believe we will succeed.”

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Jenny Darmody is the deputy editor of Silicon Republic

editorial@siliconrepublic.com