This Company Anonymized 1.8 Trillion Records to Support Biomedical Research

In the rapidly evolving life sciences and healthcare landscape, the secure and privacy-preserving exchange and linkage of health data is paramount. The topic of biomedical data collection and processing received a lot of attention during HLTH Europe 2024, and one company that stood out to me in this field was Datavant. They are a developer of cutting-edge technology that facilitates the secure, privacy-preserving exchange and linkage of health data.

Datavant, a company specializing in data logistics for healthcare, was founded in 2017 and is headquartered in San Francisco, California. The company has raised $83 million in funding to date.

Devin Gilliam, General Manager Europe & UK at  Datavant, presenting at HLTH Europe 2024. Image credit: Andrii Buvailo

A 2022 survey by Savvy Cooperative, involving 1,000 patients and reported by the American Medical Association (AMA), highlighted the importance of data privacy. Over 92% of patients believe privacy is a fundamental right and that their health data should not be available for purchase. 

Nearly 75% expressed concern about the protection of their personal health data, and only 20% felt they understood the full scope of who has access to their information. Responding to this mandate, 

Datavant has developed solutions that aim to address concerns by patients but also make sure the relevant data is available for critical research purposes, ensuring privacy preservation while enabling secure health data exchange.

Data Tokenization is to the Rescue

At the heart of Datavant's technology is tokenization, a process that converts sensitive data, known as Personally Identifiable Information (PII), into a non-sensitive equivalent called a token. 

This involves hashing and encrypting PII, transforming it into a token that cannot be reverse-engineered to reveal the original data. For example, a name like "John Smith" is always converted into the same unique token. Since different data sets may capture various PII elements, Datavant creates multiple tokens for a single piece of PII, ensuring comprehensive protection across diverse data environments. Advanced algorithms enable these tokens to be matched across different records without exposing the underlying PII, allowing for the secure linkage of patient records from disparate sources.

Datavant excels in data logistics, facilitating the seamless movement of health data from one point to another. Their technology integrates with over 500 data sources, including analytics companies, health systems, electronic health records (EHR) companies, and diagnostics labs. This integration breaks down data silos and facilitates comprehensive data exchange. Datavant’s solutions are embedded within the UK’s NHS GP system and the NHS Spine. 

In North America, they work with over 75,000 clinics and hospitals, and their technology is deployed across more than a dozen countries, primarily in Europe and North America.

Ensuring privacy and compliance is a cornerstone of Datavant’s approach. Techniques such as anonymization, pseudonymization, and de-identification are used to protect patient identities. Datavant’s methods comply with key regulations, such as HIPAA in the United States, ensuring that all data exchanges meet stringent privacy and security standards.

Supporting Life Science and Healthcare Research with Anonimized Data

Record linkage is another critical aspect of Datavant’s technology. Using tokenization, Datavant can link records pertaining to the same individual across different data sets without revealing their identity. For example, data from a diagnostic lab and an EHR can be linked to create a comprehensive patient record. This capability is particularly beneficial in clinical trials, where linking real-world data with trial data provides valuable insights into patient outcomes without compromising privacy.

On the practical side of things, Datavant’s technology has significant implications for the life sciences sector. By supporting the linkage of real-world data with clinical trial data, Datavant enhances the ability to monitor patients over long periods without additional burden. 

The company has supported over 100 clinical trials, enabling the compliant exchange of real-world data. Annually, they handle the anonymization and secure linkage of over a trillion patient records, ensuring privacy while facilitating valuable insights for life science and healthcare research.

Their solutions help in understanding real-world outcomes and costs of new treatments, supporting market access and reimbursement. 

Datavant also facilitates digital engagement with patients, ensuring compliance while enabling the comprehensive use of generated data.

Topics: Biotech Companies