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“In the future we want to conduct research in partnership with people — not as subjects, but as our partners,” said Joanne Waldstreicher, MD, Chief Medical Officer of Johnson & Johnson. “Hugo holds the promise to empower people with their data and will create innumerable opportunities for them to participate in programs and projects that are customized to their interests and needs — and provides opportunities to be part of communities that contribute to knowledge that will help us all.”
The benefits of enabling data to flow more easily extend beyond research. Patients face the same hurdles as researchers in accessing their health information from different health systems. Hugo is designed to enable patients to acquire their data in a single platform for their own use, for example when seeking a second opinion, and increase transparency in health care. It will also allow them to be the carriers of their longitudinal health records.
Researchers at the Yale School of Medicine are launching a novel approach to research that engages people as true partners in science. Using an innovative health information technology platform called Hugo, which was developed in partnership with Yale New Haven Health System, people will be able to acquire their health-related data and use it to participate in studies.
Hugo is a highly secure cloud-based personal health platform that enables people to access their electronic health records (EHRs) from multiple health care systems and synchronize them with a research database. Designed to be user-friendly, it also allows people to contribute information from wearable devices and questionnaires.
“This could be a game changer. Hugo harnesses the very latest in digital health technology and puts patients in the center, making them true research partners,” said Dr. Harlan Krumholz, the Harold H. Hines Jr. Professor of Medicine, director of the Center for Outcomes Research and Evaluation (CORE) at Yale-New Haven Hospital, and a developer of Hugo.