- At the 2016 ONC Annual Meeting, the American Medical Informatics Association (AMIA) has asked the federal government to repeal the prohibition on the use of unstructured data in order to help patients access all of their health information.
In a statement on its website, AMIA explained that the regulation that limits the use of unstructured data has caused healthcare stakeholders to only access certain parts of EHR data for patients, such as summaries, and not the entire medical history.
“The prohibition – originally included to prevent unstructured data overload – has outlived its usefulness,” said Douglas B. Fridsma, MD, PhD, FACP, FACMI, AMIA President and CEO. “Further, this prohibition has muted conversations on data portability for providers looking to switch EHRs, who currently only have access to summary records of their patients’ data.”
AMIA advised CMS and ONC to use their authority to eliminate the outdated regulation and promote the use of CDA templates, which are FHIR-based resources that are more interoperable. By using FHIR standards, healthcare providers and patients would be more likely to access complete medical records across different healthcare technologies.
In addition to helping healthcare providers, AMIA reported that it is crucial for patients to gain complete access to their complete EHR information in a variety of formats. At this point in time, patients are limited to printing out entire medical histories.
Allowing access to more complete EHR information could empower patients to participate more in their healthcare, explained AMIA. With more health data, patients could use more mHealth apps, volunteer their information for important precision medicine research, and develop a data-driven feedback loop with their providers.
While federal regulations, such as HIPAA and HITECH, have attempted to regulate how and how much patients can view, government agencies have not allowed individuals to access all of their information. CMS and ONC maintain specific rules on what qualifies as accessible information, such as HIPAA’s designated medical record.
Under HIPAA’s Privacy Rule, patients have the right to view their health information that is part of a designated medical record. The information is limited to what data could be used to make meaningful healthcare decisions, which could mean that some patient information is left out.
“Patients have a right to all of their health information, not just what CMS defines through meaningful use, or what ONC’s certification program deems necessary to meet CMS’s definition,” stated Fridsma.
The regulation on unstructured data has further complicated patient accessibility because unstructured data has not been standardized and made readily available. Patients end up receiving a summary of their medical history or disparate parts of the EHR.
However, AMIA has urged the federal agencies to encourage providers to give patients electronic copies of their medical histories if the data is already in an electronic format.
“AMIA believes if the information is stored electronically, patients are entitled to their entire medical record in an electronic format, and not just a summary record or the limited data that a vendor chooses to make available via portal or API,” added Fridsma. “Patients deserve more than PDFs, and the benefits of digitizing healthcare will only be realized when patients – and providers – have fluid, portable data.”
The industry group suggested that CMS and ONC work on developing a convenient “print all” functionality with certified health IT systems. This function would provide patients with more thorough and useable copy of their medical histories.
“But until we develop the electronic equivalent of ‘print all’ for patients, which goes beyond PDFs and summary records, we will continue our struggle to free patient data,” said Fridsma.