Scientific research is over-relying on precision medicine and the ability of electronic health records to support it, according to a viewpoint in the Journal of the American Medical Association.
The authors, from Stanford University and the Mayo Clinic, write that many aspects of precision medicine, combined with IT, have been touted as leading to “transformative improvements” in healthcare. However, while a large amount of funding has been devoted to precision medicine, research has not produced results.
For instance, in 2016, $15 billion of the $26 billion in research sponsored by the National Institutes of Health (NIH) has been linked to precision medicine. The research covers themes, such as common diseases will be explained by a few DNA variants, precision medicine will improve diagnostics and treatment and that EHRs provide the “structural underpinnings” of precision medicine.
However, although these ideas are “entrenched” in current research, the research itself is not meeting expectations. For example, diseases are actually more complex, even single gene ones like sickle cell anemia; the adaptive nature of most tumors hinders molecularly targeted therapy for cancer.
Moreover, the financial and clinical benefits EHRs have been predicted to provide have not occurred because of lack of interoperability, the poor quality and accuracy of information, cost overruns in transitioning to the systems and privacy and security concerns, the authors noted. That make EHRs 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. Otherwise, the health care system may become hostage, wasting increasing resources to continuously upgrade electronic technology without really helping patients,” the authors state.
They recommend that NIH fund more high-risk and unconventional ideas, have independent assessors regularly apprise whether research is meeting its deliverables and “sunset” underperforming initiatives.
To learn more:
- read the viewpoint