EHR Interoperability, Patient Data Access Key to Precision Medicine

By Christopher Jason

– While the majority of medical treatments are geared to the average patient, precision medicine aims to cater to the individual and connect each patient with personalized treatment. However, EHRs are currently incapable of providing this type of customized care, and further optimization and increased interoperability are needed to achieve this type of care.

As defined by the Precision Medicine Initiative (PMI), precision medicine is “an emerging approach for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle for each person.”

This concept isn’t exactly new. For example, a patient who requires a blood transfusion is not given blood from a randomly selected donor. Instead, the donor’s blood type is matched to the recipient to reduce the risk of complications. But precision medicine takes this a step further, pushing healthcare towards personalized medicine.

While there are many examples of precision medicine, PMI said the role of precision medicine in daily healthcare is minimal, and researchers hope this approach can further expand in the future.

Recent advances in genetic testing have made the goal of precision medicine more achievable. Yet, EHR systems, and health IT as a whole, are not able to fully integrate and interpret this data.

In order to integrate genomic information into EHRs, amplify patient autonomy, access, genetic literacy, privacy and protection, transferability of data, and assigning a data set are crucial, according to a recent statement released by the American College of Medical Genetics and Genomics (ACMG).

“The electronic health record serves as a powerful interactive tool in improving the healthcare of patients and populations,” Terri Grebe, MD, FACMG Chair of the ACMG Social, Ethical, and Legal Issues Committee, said in a statement.

“As an integral component of medical treatment, genomic data in the EHR must therefore be continuously and easily accessible to both patients and providers, while simultaneously receiving appropriate privacy protection, to achieve the goal of personalized medicine.” 

The goal of precision medicine may occur much quicker by further EHR optimization that links genomic data to clinical decision tools. However, ACMG says EHR vendors do not have the ability or potential to create these tools because genomic data is so complex. Future third party API development could be the answer.

The Office of the National Coordinator for Health Information Technology (ONC) final rule, which promotes patient data access using third-party apps and APIs, may make patient genetic data interoperable between separate healthcare facilities.

While there have been differing viewpoints of why EHRs may not be adequate for precision medicine and genomic research, most point to a lack of interoperability as a significant roadblock.

Test results, secondary findings, and the clinician’s interpretation of data should be accessible to the patient, and this could soon become a reality.

To enhance patient experience, ACMG recommends test reports should connect to the clinician’s electronic note, which in return should be visible and accessible by both the patient and provider. Additionally, the report should be easy-to-read and in a clear format for the clinician to interpret the data and make it clear the genetic test results were utilized.

In an ideal interoperable world, genomic data would be available to all of the patient’s providers, which in return, would reduce duplicate testing and reduce financial burden.

Based on the final rule, ACMG also recommends the use of Health Level 7 (HL7) genomics model and Fast Healthcare Interoperability Resources (FHIR) to enhance interoperability.

While EHR systems can store massive amounts of patient data, it was the ONC final interoperability rule that granted unhindered patient data access and the ability for patients to conduct their own medical research. This full access to patient data could enhance the chances of precision medicine and data research.

Although health IT and genomic testing are continuously making strides, policies, procedures, and further optimizations are still necessary for precision medicine to be integrated into the EHR.  

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