Researchers at Yale School of Medicine unveiled a health information technology, called Hugo, to enable patients to access their electronic health records (EHRs) and synchronize their health data with a research database to better facilitate participation in research studies.
Yale School of Medicine researchers developed the Hugo technology platform in partnership with Yale New Haven Health System and describe it as a new approach to research that engages patients as partners in science.
According to a Yale School of Medicine press release, Hugo is a highly secure cloud-based personal health platform that enables people to access their 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.
Harlan Krumholz, M.D., 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, called the technology platform a “game changer,” and said “Hugo harnesses the very latest in digital health technology and puts patients in the center, making them true research partners.”
According to the Yale School of Medicine press release, 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.
In the first research study to use Hugo, researchers will examine hospital readmission and emergency department use after hospital discharge. According to the developers of the Hugo technology, approximately 20 percent to 30 percent of patients who need to be readmitted to the hospital are admitted to a different facility. This presents challenges when studying readmission rates and risk factors because researchers must manually track down and collect this information. Krumholz and Allen Hsiao, M.D., associate professor of pediatrics and of emergency medicine and chief medical information officer for Yale School of Medicine and Yale New Haven Health System, are leading the first research study.
With Hugo, patients will be able to authorize researchers to use their data, which can be pulled from disparate EHR systems and will be synchronized, and organized so that it is suitable for research. The study supports Sync-for-Science, a concept promoted by the National Institutes of Health Precision Medicine Initiative, which seeks to better engage people in research and promote their ability to obtain their own data and decide whether they want it used for research.
“We believe this is going to be a new era of discovery,” Robert Alpern, M.D., dean of the Yale School of Medicine said. “It’s going to ensure that we’re doing research better, less expensively, and in a way that fully respects and honors those who participate.”
Joanne Waldstreicher, M.D., chief medical officer of Johnson & Johnson, said, “In the future we want to conduct research in partnership with people—not as subjects, but as our partners. 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 Yale Center for Clinical Investigation, Yale School of Medicine, Yale-New Haven Hospital and the Yale Medical Group are providing support for the study. The study is partially funded by the Yale Clinical and Translational Science Award grant from the National Center for Advancing Translational Sciences at the National Institutes of Health.
Jerome Kassirer, M.D., former editor of The New England Journal of Medicine and distinguished professor at Tufts University School of Medicine, said in a statement, “By leveraging digital data with a technology that puts people in a position to easily and securely acquire and share their data, the Hugo technology holds great promise to accelerate our progress toward next generation breakthroughs.”
