Yale-New Haven helps develop cloud system for sharing EHR, research data

Patient-centered approach is at heart of Yale School of Medicine effort to collect information for medical research initiatives.

Researcher at the Yale School of Medicine have deployed a new cloud-based system that enables them to pull patient electronic health records from across multiple healthcare organizations and to synchronize that data.

The system, called Hugo, was developed in a partnership between Yale-New Haven Health System and health information exchange vendor Stella Technology. Hugo is designed to allow patients to gather all their health-related data for healthcare research studies.

The platform is currently being tested to ensure that the technology works well and to identify any areas that need improvement, according to Harlan Krumholz, MD, professor of internal medicine at Yale-New Haven and one of the developers of Hugo. While Hugo is not yet available outside of Yale’s studies/testing environment, they are laying the foundation for broader release and uses.

“Our first studies with Hugo are providing real-world experience and focus on the ability of people to have Hugo fetch their data and sync it securely with a research database,” says Krumholz. “Ultimately, Hugo is about empowering people with their health data, putting them in a position to leverage it, and making partnerships possible for sharing data with researchers and others. But, the premise is that people should be in a position to use their data for their own benefits and, if they choose, for the benefit of others.”

Patients sign up for Hugo and use a portal/password to verify their identity to link with EHRs that have their records. Then, with their permission, the platform harmonizes the data from different sources providing the ability to share it with researchers.

“Unless we, as researchers and clinicians, partner with our patients and find a way to give them the ability to exercise their federal right to acquire their own data and share it, then we’re not going to make progress,” says Krumholz. “This is a fundamental shift in the way we think about research.”

Yale-New Haven itself has launched a study that will rely on Hugo. The study, partially funded by a Yale Clinical and Translational Science Award grant from the National Center for Advancing Translational Sciences at the National Institutes of Health, is looking to see if a central repository of patient EHRs, such as Hugo, can be used to reduce readmissions and post-discharge emergency department utilization.

“Yale, like every other providers, has patients each day that are coming from other places and it’s not uncommon to have missing records,” says Krumholz. Yale- New Haven’s study is looking to see if a repository such as Hugo can provide a more complete view of a patient, allowing a provider to improve care and cut down on readmissions.

“Hugo is a platform where people can pull their data and have it organized, harmonized, curated and ready for use,” he adds. “They’re in a position where they can use it for their own purposes but also participate in studies as full partners. My hope is that this becomes a platform that is co-created with the people who use it.”

Patients can access Hugo from their mobile devices, according to Krumholz, who describes the platform as a next-generation personal health record that is auto-populated and updated daily from EHRs. “At this point, we are focusing on systems that are compliant with federal standards that provide for people to view, download and transmit their electronic records,” says Krumholz.

In addition to EHR data, he reveals that Hugo will ultimately allow participants to contribute information from wearable devices and sensors as part of subsequent development phases.

According to Krumholz, Stella helped develop the software. “We went with a group that we think is arguably the best, if not one of the best in the country, building connected healthcare networks,” he says. “We’ll be going live soon in a controlled fashion in order to test every aspect of the software.”

The goal of the study is to thoroughly evaluate the performance of the software and the user experience. “We are starting with people locally before we make it available to others. We are moving quickly, but responsibly,” concludes Krumholz.

Besides the Yale School of Medicine, partners on the study include the Yale Center for Clinical Investigation, Yale Medical Group, as well as Yale-New Haven Hospital.

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