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Patient access to medical information can spur research

Yale Medicine Magazine, 2016 - Autumn


It’s called Hugo, and it aims to provide patients with unprecedented control over their medical records while unleashing the enormous research potential of digital medical data.

The brainchild of a Yale faculty member, Hugo is a mobile application for individuals that collects their medical information from multiple sources and stores it in a single secure cloud-based location. The data will be comprehensive—everything from hospital records, doctor visits, and test results to prescriptions, vital sign readings, and data from wearable devices, said Harlan M. Krumholz, M.D., the Harold H. Hines, Jr. Professor of Medicine, director of the hospital’s Center for Outcomes Research and Evaluation, and a member of the Hugo team.

Hugo is not an electronic medical records (EMR) system, Krumholz emphasized. “Instead, it helps patients obtain, collate, and organize their health-related information, much of which may come from an EMR,” he said. “Hugo is a personal health information system, a way for people to automatically pull together all their health-related data, contribute to it, and share it with whomever they want.”

It is the sharing part that the Hugo team hopes will spark a revolution in medical research. Hugo will ask patients to share their data with researchers, Krumholz said. No information—not even anonymous information—will be shared without the person’s permission. Researchers who sign up with Hugo will be able to track down subjects, collect their information, and enter it into a database, Krumholz said. “Researchers can use Hugo to replace the manual method of collecting data and following research participants over time,” he said. “Hugo has the potential to make it easy for people to participate in research, give them more options, and reduce the costs of research.”

One potential obstacle to Hugo is different EMR systems that can’t talk to each other. The Hugo team has developed software to overcome that barrier.

Inspiration for Hugo sprang from Krumholz’s reflections on “the next big change” in medicine. He concluded that the explosion of digital data—more than 90 percent of hospitals now use electronic medical records compared to just 18 percent in 2010—will lead to immense innovation and transform medicine. To trigger that revolution, patients need access to their data and the ability to share with researchers, he said. “The only way to get there was to put people in a position where they could acquire their data from disparate sources and have it organized and harmonized. I felt Hugo could be the critical lynchpin that could release a lot of that capability.”

After almost two years of development, testing on Hugo began last summer. About 75 to 100 patients who come to the Yale New Haven Hospital emergency department with chest pain will be offered the app in exchange for releasing their data to a study. In addition, the Hugo team is seeking volunteers to test the platform, which will operate on mobile devices, tablets, and desktop computers. The app, which developers currently plan to offer at no cost to patients, will be ready for launch to the general public in 2017, Krumholz said. The team will introduce Hugo in stages, starting at Yale and in Connecticut and some other prominent institutions, and then rapidly expanding to other parts of the country.

“We developed Hugo to empower people with their own health-related data,” Krumholz said. “There’s no system that engenders the technology and people-centeredness quite like it.”