Blockchain firm Equideum and Nokia building exchange to let patients sell healthcare data

The market for patient healthcare data is booming. To that end, blockchain company Equideum Health and Nokia have announced plans build a SaaS-based marketplace where patient information is amassed for sale to researchers.

The Decentralized Equideum Exchange will be a blockchain-based service enabling patients to sell their personal data to be used by pharmaceutical and other life sciences firms for research purposes. “From a life sciences perspective, they’d love to have access to this data,” said Jeffrey Smith, a Gartner research director focusing on pharmaceutical R&D within life sciences.

Patients who share their data will be paid through Eqideum’s Ethereum blockchain network with stablecoin, or cryptocurrency that is backed by dollars.

Today, many pharma and life sciences research companies build out their own patient healthcare information databases through direct contact with patients, healthcare providers, or insurance payers, Smith said. Most patient data comes from insurance claims, or directly from patients whose healthcare providers ask them to give consent for its use. Consent, however, is typically an all-or-nothing deal.

Patient data is also “tokenized” or anonymized, so it’s more difficult to connect it back to the patient who provided it, and it can meet HIPAA regulations governing patient privacy rights.

Equidium Health’s SaaS platform is relatively unusual in that it gives patients providing the data fine-grained permissions and lets them set a time limit on how long the data can be used, Smith said.

“By comparison, most patients agree to blanket consents,” said Sean Manion, chief scientific officer at Equideum Health. “You’re often asked to sign a one-time consent that covers everything your health system wants to do with it once it’s de-identified.”

Data brokers, or companies that gather patient healthcare data from multiple entities, act as a go-between for research organizations. The brokers pool the patient data, making it more valuable to study. In other words, the more data they can stockpile, the more valuable it is statistically, according to Smith.

Healthcare information is used by life sciences companies for drug discovery and development, drug trial design, precision medicine, and toxicity review, among other things.

There is a multi-billion dollar industry that collects healthcare information, strips it of basic personal identifiers such as name, address, and Social Security number, and then sells it off to researchers, drug developers, marketers, and others.

Medical informatics companies, such as Iqvia (IMS Health), Optum, and Symphony Health reap the profits of selling the data while the people from whom it’s collected have no control over how it’s used. Nor do they get any compensation for it.

This is not the first time blockchain has been used as a platform to sell patient data. In 2018, start-up Hu-manity.co partnered with IBM to develop an electronic ledger that gives consumers the cryptographic key to grant access to their personal data, even allowing patients or others to control the specific purpose for which it’s used, while also allowing them to eventually profit from it.

Blockchain’s interoperability could underpin data exchange, serving as an alternative to today’s health information exchanges (HIEs); essentially, it would act as a mesh network for transmitting secure, near real-time patient data for healthcare providers, pharmacies, insurance payers and clinical researchers, according to IDC.

Equideum is an Ethereum blockchain technology company whose platform is built atop Web3. As opposed to Web 2.0, which is defined by centralized data hosting services, Web3 is a new iteration of the World Wide Web based on peer-to-peer infrastructure, or “decentralization,” and token-based economics.

“Users own their own data, identity, content, and algorithms, and can govern the blockchain protocols they use by owning governance tokens,” Gartner Distinguished Analyst Avivah Litan wrote in a blog. “Users participate as ‘shareholders’ by owning the protocols’ tokens or cryptocurrencies.”

Web3 also shifts power and money away from centralized Web 2.0 “gatekeepers” such as Google and Facebook. “For example, Web3 disrupts gatekeepers’ targeted-advertising businesses by shifting ownership of required consumer data away from gatekeepers and to consumers themselves,” she said.

Equideum calls its healthcare and research networks “Data Integrity and Learning Networks” (DILNs). DILNs feature self-sovereign identity, fine-grained verifiable consents, and privacy restrictions across both enterprise and individual data silos.

The cybersecurity implications of offering patient data to third parties could be significant. To that end, Equideum Health is not using a more typical data warehouse in which to store the data. A patient’s information is stored separately from others on a peer-to-peer decentralized network, so if hacked, a bad actor would attain access to only one data store, according to Heather Flannery, founder and CEO of Equideum.

To build out the Decentralized Equideum Exchange, Equideum Health (formerly ConsenSys Health), will also tap into technology stacks from existing ConsenSys partners; that technology will include Intel’s Xeon Ice Lake CPUs with SGX security features and Microsoft Azure.

Equideum’s SaaS offering will act as a source of data for research companies performing clinical trials. Those firms need to match patient data to their specific studies, and using a decentralizing network ensures they’re not pigeonholed into one data store that can be limited by payer/provider data participants.

“Currently, to shortlist patients for clinical trials, companies invest significant money and time in data acquisition, and face issues like poor data quality, compliance, and cost of intermediaries,” Nokia said in a statement.  

The Decentralized Equideum Exchange uses Nokia NDM, which will run within a public-permissioned Ethereum blockchain architecture. The blockchain electronic ledger supports self-sovereign data and identity functionality similar to decentralized finance (DeFi) ecosystems.

Equideum Health’s SaaS platform creates a multi-party ecosystem, where the data marketplace can securely process, enrich, assemble, and analyze data using blockchain, decentralized AI, and privacy-preserving technologies — and it can then securely exchange this data.

Equideum Health’s Clinical Trials Matching capability enables pharmaceutical companies optimize the clinical trial lifecycle through faster patient identification; the use of advanced patient consent mechanisms; patient remuneration via the use of digital wallets; and enhanced patient transparency on how data is used.

There will still be multiple ways for patients to sell their data. If the healthcare insurance provider or healthcare provider were a participant in one of Equideum Health’s existing data integrity and learning networks (DILNs) then they will have the ability to consent mechanisms to their members.

“Then there’s also our straight, direct-to-consumer application where patients may learn about us a number of ways and be activated directly into our offering,” Manion said.