Warner urged that, at aminimum, CMS’ final rule should include standards that guarantee patients have ready access to their personal health data and an ability to regularly monitor the information for accuracy. Patients need to beinformed of all commercial uses of their data, including any third parties their data have been shared with, Warner urged.
Given that the patient record request process can take time, it is of great benefit to access ones data prior to an urgent health need. Additionally, healthy individuals may also benefit from correcting errors in their medical record before a health issue occurs. Among individuals that accessed their medical record online, almost one in 10 requested a correction to information in their record. Explaining these benefits to healthy individuals may increase usage of online medical records.
By understanding requirements for patient requests for medical record corrections and working to encourage patient data access and review, clinicians, hospitals, and health systems can empower patients as partners in their pursuit of healthcare safety.
John Halamka, health IT expert and executive director of the Health Technology Exploration Center of Beth Israel Lahey Health, said the proposed rules are a step in the right direction, helping address “friction in data flows” that have long existed in healthcare. They also ensure patients can access their data with no unnecessary difficulty. But he does question the timing of enforcement.
Focus on interoperability for health data systems has increased recently given multiple proposed Department of Health and Human Services regulations addressing how health data is shared. Healthcare providers are a primary source of health data and should be aware of how to prepare for these new regulations.
While each hospital has its unique approach to managing its health data and sharing of that information, there are actions all hospitals can take to prepare for heightened expectations for health data interoperability.
Special interests and congressional inaction blocked efforts to track the safety of electronic medical records, leaving patients at risk.
One study uncovered more than 9,000 patient safety reports tied to EHR problems at three pediatric hospitals over a five-year period.
Allegations of EHR-related injuries or other flaws have surfaced in the courts. KHN/Fortune examined more than two dozen such cases, such as a California woman who mistakenly had most of her left leg amputated because the EHR sent another patients pathology report indicating cancer to her medical file. A Vermont patient died after a doctors order to scan her brain for an aneurysm never made it from the computer to the lab.
Despite such incidents, experts believe EHRs have made medicine safer by eliminating errors due to illegible handwriting and in some cases speeding up access to vital patient files. But they also acknowledge they have no idea how much safer, or how much the systems could still be improved because no one a decade after the federal government all but mandated their adoption is assessing the technologys overall safety record.
Personal data is aggregated, packaged and sold every day without the knowledge or full consent of the subject consumers, and it has been exploited and abused to the detriment of those consumers. However, overly stringent privacy rules regarding health data could impede timely care and patient safety, writes Piers Nash, former director at the Center for Data Intensive Science, who suggests a Hippocratic oath for using and sharing personal health data.
Major federal rules aimed at stopping information blocking and spurring data sharing are one step closer to being finalized. The Office of the National Coordinator for Health IT’s interoperability and information blocking rule is now under reviewat the Office of Management and Budget, the last step before publication.
ONC official Steven Posnack explains how FHIR is taking hold as the industry waits for the ONC’s proposals to tackle data blocking.