ARPA-H Awards Duality Technologies $6 Million to Develop Framework for Sharing Sensitive Patient Data
The Challenge of Rare Diseases
The phrase "rare disease" is a bit of a misnomer. While some diseases statistically are very rare, the fact is that roughly 20% of the country’s population is affected by a rare disease at some point in their lifetime. And while there is active research into rare diseases, the bulk of it is aimed at people with northwestern European backgrounds and genetics, says Kurt Rohloff, the CTO and co-founder of Duality Technologies.
"There’s much less understanding of the genetics and genetic makeup and mutation correlations between mutations and cancer or other kinds of diseases outside of the classic focus of northern and western European heritage individuals," Rohloff says. "We have a bit of an institutional bias in the world."
The Need for a Solution
Very large healthcare organizations, such as the Broad Institute, Mass General, and Intermountain Health have a large amount of valuable data themselves to conduct medical research on things like rare diseases. However, much of the data they have is skewed toward population centers with a European genetic heritage, Rohloff says.
The good news is that if those large healthcare organizations want a data set from a certain city, they have the legal resources to write data use agreement that provides the necessary privacy protections.
"There’s nothing untoward about it. They have administrative policies about how they handle the data when they take it in to keep it private and secure. All best practices. They do it right," Rohloff tells BigDATAwire.
The ARPA-H Project: SQUEEZES
The Advanced Research Projects Agency for Health (ARPA-H) in September awarded Duality Technologies a contract worth up to $6 million to develop a framework for enabling healthcare organizations to share highly sensitive patient data. If successful, the project will enable smaller healthcare organizations to securely access sensitive health data to conduct research into rare diseases, including those that have a disparate impact on racial minorities.
The project, dubbed SQUEEZES, will use Duality’s fully homomorphic encryption (FHE) technology to enable rural and native healthcare organizations in the United States to pool together their healthcare data and analyze it, but without enabling each other to read it.
How it Works
The healthcare organizations will still need to get consent from individuals before using their data for research into rare diseases. But since the data remains encrypted the entire time, the amount of legal work required to obtain the necessary consent is reduced, Rohloff says.
"All these various [organizations]… have their own data," says Rohloff, who has worked broadly in the DARPA community with Duality’s homomorphic encryption technology. "An organization would encrypt their data locally, using a local encryption key…and upload it to a server, which might be at a cancer research center. And multiple rural or tribal health agencies might do this, each encrypting with their own key."
Once all the encrypted data is centralized, it can be analyzed and used to build machine learning models within Duality’s FHE environment.
Conclusion
Building a system that enables secure collaboration on sensitive data is a complex task, but Duality Technologies is well-equipped to take on the challenge. With its fully homomorphic encryption technology and expertise in the field, the company is poised to make a significant impact in the world of healthcare research.
FAQs
Q: What is the goal of the ARPA-H project?
A: The goal of the ARPA-H project is to develop a framework for enabling healthcare organizations to share highly sensitive patient data to conduct research into rare diseases.
Q: What is fully homomorphic encryption (FHE)?
A: FHE is a type of encryption that allows data to be analyzed and processed while it is still encrypted, without having to decrypt it first.
Q: How will the data be encrypted?
A: The data will be encrypted locally by each healthcare organization using a local encryption key, and then uploaded to a server for analysis.
Q: How will the results be shared?
A: The results will be shared with each healthcare organization that contributed data, and they will be able to run an approval process with their local key to grant access to the analytic party.
