Researchers at the Yale School of Medicine are launching a novel approach to research that will engage people as partners in science.
The secure platform, called Hugo, was developed in partnership with Yale New Haven Health System to allow people to acquire their health-related data as well as use it to participate in studies. In other words, with Hugo users are able to easily contribute information to research from wearable devices, questionnaires and their health records.
“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.
Krumholz and Dr. Allen Hsiao, associate professor of pediatrics and of emergency medicine and chief medical information office for Yale School of Medicine and Yale New Haven Health System, are leading the first research study that will use Hugo. Said study will examine hospital readmission and emergency department use after hospital discharge.
Currently, 20 to 30 percent of patients who need to be readmitted to the hospital are admitted to a different facility, and this presents challenges when studying readmission rates and risk factors because researchers must manually track down and collect this information.
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.
“The time has arrived for research to be understood as a partnership between researchers and participants,” said Debra L. Ness, president of the National Partnership for Women & Families.
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, which 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.