Researchers at the Yale School of Medicine http://medicine.yale.edu are now using technology to partner with individuals and patients as partners in science. This is being accomplished by using a health IT platform called “Hugo”.
Hugo was developed in partnership with the Yale New Haven Health System www.ynhhs.org and with the National Center for Advancing Translational Sciences (NCAT) https://ncats.nih.gov at NIH for the Yale Clinical and Translational Science Award.
With Hugo, patients will be able to authorize researchers to use their data which can be pulled from disparate EHR systems and be organized for research. “We believe this is going to be a new era of discovery,” said Dr. Robert J. Alpern, Dean of the Yale School of Medicine.
The Yale study will examine hospital readmission and emergency department use after a hospital discharges a patient. About 20 percent to 30 percent of patients who need to be readmitted to the hospital are admitted to a different facility. This presents challenges because researchers must manually track down and collect this information.
The Yale study supports the “Sync-for-Science” (S4S) www.sync4science.org program promoted by NIH’s Precision Medicine Initiative. The S4S project wants to engage people in research and promote their ability to obtain their own data and then decide whether they want it to be used for research.
The S4S program allows individuals to connect a research app to their electronic health data so that the data can be donated for research purposes. It also helps providers give their patients a way to participate in research studies.
Hugo’s ability to harness large amounts of data controlled by patients is important to 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,” reports Rick Kuntz, MD Chief Scientific, Clinical and Regulatory officer of Medtronic www.medtronic.com.
As Joanne Waldstreicher, MD, Chief Medical Officer of Johnson & Johnson www.jnj.com, summed up, “Hugo holds the promise to empower people with their data and creates the opportunity to participate in programs and projects that are customized to their interests and needs.”