In his 2015 State of the Union address President Obama announced the launch of his precision medicine initiative, an audacious initiative to address these issues. In a nutshell, precision medicine customizes health care; That is, medical decisions are tailored based on the individual characteristics of the patients, ranging from their genes to their lifestyle. To have a clear understanding of the relationship between individual characteristics of patients and medical outcomes, it is necessary to collect various types of data from a large population of individuals. The precision medicine initiative requires a longitudinal cohort of one million individuals to provide researchers with various data types including DNA, behavioral data, and electronic health records. Assembling such a large sample of many different data types proposes two unique challenges pertaining to healthcare information technology: interoperability and privacy.
The federal government has already spent $28 billion to incent medical providers to adopt electronic health record (EHR) systems. As a result, almost all of the medical providers in the United States currently compile an electronic archive of their patients’ medical records. However, most of the EHR systems are not able to exchange information with each other. This is a strange problem in the age of information technology and Internet connectivity. There are a variety of technical and economic reasons, which make it especially complicated and difficult to solve.
Given the current lack of interoperability between EHR systems, it seems highly unlikely to be able to obtain a complete medical history of one million Americans. To succeed, the precision medicine initiative has to either overcome the lack of interoperability problem in the nation’s health IT system or to find a way around it. Congress members in both the House and Senate are considering new rules that would stop EHR vendors from interfering with medical providers that had already started transferring records. These efforts are fraught with difficulty and will take a very long time to produce tangible results.Continue reading…