One of the key benefits expected of electronic health records is the contribution that digital systems would make to medical research.
Because patient records had been primarily paper-based, so, too, were medical research programs. Many hoped that electronic records would help in identifying patients for research initiatives, gathering their medical information and facilitating research in myriad ways. Even though the vast majority of hospitals and physician practices have moved to electronic records, medical research programs have been slow to recognize benefits.
But an effort at the Yale School of Medicine may offer hope to medical research in the U.S. Researchers there 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. An update on the initiative will be presented during an educational session at HIMSS17 on Monday, February 20.
“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 has launched a study to see if a central repository of patient EHRs, such as Hugo, can be used to reduce readmissions and post-discharge emergency department utilization.
Krumholz and Lin Wan, co-founder and chief technology officer at Stella Technology, will give an update on the Hugo beta test in the HIMSS17 session, “What’s next: People-powered knowledge generation from digital,” at 12 p.m. EST February 20 in Room W304A.
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