- A white paper published by the Workgroup for Electronic Data Interchange (WEDI) explores the potential to improve care coordination and health outcomes through the use of genomic information, a potentially depending in large part on EHR integration and optimization.
"Although improvements to electronic health records (EHRs) have been made, much work remains to optimize their ability to support genomically informed care, and in turn, for genomic information to contribute to improvements in care coordination," writes the WEDI Genomics Workgroup, the authors of the white paper.
According to the workgroup, EHR integration is essential to enabling genetics-based care because of how and where genomic data are generated:
As we go beyond primary and specialty providers, we recognize that many ancillary providers also play a significant role in genetics-based care. Besides the genetic counselor (who may order genetic testing), these other providers likely will not order genetic or genomic tests, but will need to have access to the same patient data as the physicians. An integrated EHR capable of accepting and sharing data with each of these providers is essential to coordinated care in the expanding area of clinical genetics/genomics.
In fact, the Genomics Workgroup refers to a genetic counselor returning genomic data back to the patient's primary care physician as the initial step to supporting genetics-based care coordination. "In order to manage this process, an integrated data system and targeted decision support for specific providers needs to be in place," it adds.
Also critical to EHR integration of genomic data is enabling patients to share that data, such as with researchers.
"To take steps toward finding cures, physicians and patients need to be collaborators. Ensuring that patients can access their own health records, including their genetic/genomic data, will make it easier for patients to donate their data to research. Opportunities to share data exist with the many patients choosing to participate with registries and with emerging options for patients to donate clinical data from their EHR," the authors observe.
In order to achieve to prove the value of genomics to improvements in care coordination and health outcomes, the WEDI Genomics Workgroup calls for the creation of a genetic/genomic infrastructure, for which health IT standards will have a critical role to play.
The white paper identifies health IT standards such as the clinical document architecture (CDA) and Fast Healthcare Information Resources (FHIR) — which includes an application programming interface (API) — as key players in promoting health data access, exchange, and analytics.
But first and foremost, the WEDI Genomics Workgroup views linking genomic data with a patient's EHR as a key requirement in standing up this health IT infrastructure.
"When a clinician orders a drug, needs genetic information for a diagnosis, or a risk analysis to begin early screening, the EHR can query the repository and get the genotypic data it needs and copies the data locally. In fact, with just these two components and one clinical genetic interpretation service, the basics of precision medicine are supported," it maintains.
Additionally, this genetic/genomic infrastructure must be capable of incorporate patient-generated health data:
Many technology start-ups will be offering apps and other services that will be patient-centered and patient-driven. These consumers will likely demand that their data be in their EHR. Even traditional research protocols that produce data from studies and clinical trials will be required to give access to the study participants. This new model will be widely adopted because of the influence of the Precision Medicine Initiative’s decision to require data access.
The workgroup concludes that the time is ripe for the healthcare industry to embrace genetics-based care as a result of decreasing costs of and increasing access to genetic testing. But haste would make waste if stakeholders failed to take a standards-based approach.
"Supporting a common standard for all parties will allow for better access, more seamless integration and an informative position on infrastructure, architecture, and security requirements for housing data," the authors recommend.