Precision medicine--using personalized treatment based on genetics and related information--is the current darling of scientific research and expected to be one of the biggest breakthroughs in healthcare. Such efforts, and the research to create these breakthroughs, are dependent on the data in electronic health records.
However, if two recently published journal articles are any indication, EHRs aren’t yet ready to handle the task.
The first, published in the Journal of the American Medical Informatics Association (JAMIA), addresses the need for informatics and a strong computational infrastructure to use precision medicine to improve healthcare. The article identifies seven key areas in need of further informatics research and innovation to support precision medicine, including the need to “enhance” EHRs.
Its authors recommend, among other things, that EHRs must better aggregate and display patient information, and provide “standards-based programming interfaces that enable the integration of external data and knowledge sources as well as the development of tools that support custom workflows, novel analytics, data visualization, and data aggregation.” There also must be standards to ensure the privacy, security and integrity of the data, as well as to facilitate data integration and exchange.
The second article, published in the Journal of the American Medical Association (JAMA) is much more blunt. The authors say that precision medicine, in conjunction with the IT to support it, is supposed to lead to “transformative improvements” in healthcare, noting that billions of dollars have been devoted to the cause. However, they say, EHRs, which are supposed to provide the “structural underpinnings” of precision medicine, just can’t cut the mustard. EHRs aren’t sufficiently interoperable, information they hold is inaccurate and of poor quality, and they don’t keep patient information secure, which makes their use for research into the origins of disease, as proposed for the precision medicine initiative, “highly problematic.”
“Although it is difficult to argue for a return to paper records, any claim of future transformation of the medical record should include well-defined accountability and review mechanisms," they write. "Otherwise, the healthcare system may become hostage, wasting increasing resources to continuously upgrade electronic technology without really helping patients."
Precision medicine is supposed to be the new frontier. But it sounds like the wagon wheels needed to get there are stuck in the mud.
How to proceed? We do know that in order for precision medicine to be successful, the research must be impeccable, and the data it relies on irrefutable. Do we first improve EHRs themselves before carrying on with genetic research, so that the work is more reliable? Or should research be scaled back, say to one health system’s EHR, so that an issue like interoperability isn’t a concern, even though the research may be less helpful? Or would it be better to forge on with the billions of dollars dedicated to this effort and clean up the work as we go along?
Both articles make a few recommendations. The JAMIA article stresses the importance of including informatics in the technologies and methodologies of precision medicine, and of collaboration among stakeholders, including EHR vendors, to improve their products. The JAMA article recommends that the research be independently assessed to see if it’s meeting its “deliverables” and to end underperforming research.
But they don’t answer how to address the fact that precision medicine is evidently being built on an inadequate foundation that can’t support it.