Sync-for-Science, a concept promoted by the National Institutes of Health Precision Medicine Initiative, aims to give patients access to their electronic health record (EHR) data and allow its use for research. Hugo, an innovative health information technology platform, seeks to make that concept a reality.
Led by Harlan Krumholz, MD, Harold H. Hines Jr. Professor of Medicine and director of the Center for Outcomes Research and Evaluation (CORE) at Yale-New Haven Hospital, Hugo is a highly secure cloud-based personal health platform that enables patients to access their electronic health records from multiple health care systems and synchronize them with a research database.
“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 Krumholz, who developed Hugo in partnership with Yale New Haven Health System.
“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,” said Jerome P. Kassirer, MD, former Editor of The New England Journal of Medicine and Distinguished Professor at Tufts University School of Medicine.
Krumholz and Allen Hsiao, MD, associate professor of pediatrics and of emergency medicine and chief medical information office for Yale School of Medicine and Yale New Haven Health System, as well as a former fellow at the Yale Center for Medical Informatics, are leading the first research study that will use Hugo. The study will examine hospital readmission and emergency department use after hospital discharge. Approximately 20 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.
YCCI, the School of Medicine, Yale-New Haven Hospital and Yale Medicine are providing support for the study. YCCI has been instrumental in supporting the study and is helping to recruit participants, who will contribute to the study and serve as data donors. These efforts include soliciting input from community members through its Cultural Ambassadors program, comprised of representatives from Junta for Progressive Action and the African Methodist Episcopal (AME) Zion Church. “We’re excited to be a part of this new chapter with YCCI that will take research into the digital age and bring members of our community – who are underrepresented in research – into the process,” said Rev. Eldren Morrison, Pastor of the Varick Memorial AME Zion Church.
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.
Dr. Harlan Krumholz
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, harmonized, and organized so that it is suitable 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 system is easy to use and will allow people to contribute information from wearable devices and questionnaires, providing direct information about their own experience, she noted.
Hugo’s ability to harness large amounts of data that is controlled by patients has attracted the attention of industry. There is a pressing need for new technologies that promote patient engagement and enhance data quality while reducing the cost and burden of data acquisition, according to Rick Kuntz, MD, MS, Chief Scientific, Clinical and Regulatory Officer of Medtronic.
“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 the epitome of patient-centered care,” said Hsiao. “It enables and empowers patients to able to collect their medical information - from multiple different EHRs if necessary- - in one place, under their control. They can choose to use it for routine clinical care, second opinions, or to become ‘digital donors’ to any investigators they are inspired by.” Hugo will also allow patients to be the carriers of their longitudinal health records.
“We believe this is going to be a new era of discovery,” said Robert J. Alpern, MD, dean of the Yale School of Medicine. “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.”