By Cora Alisuag, RN, MN, MA, CFP, president and CEO, CORAnet Solutions, Inc.
It has only been about two generations since traveling medicine shows were common forums for medical information. Phony research and medical claims were used to back up the sale of all kinds of dubious medicines. Potential patients had no real method to determine what was true or false, let alone know what their real medical issues were.
Healthcare has come a long way since those times, but similar to the lack of knowing the compositions of past medical concoctions and what ailed them, today’s digital age patients still don’t know what is in their medical records. They need transparency, not secret hospital –vendor contracts and data blocking, like the practices being questioned by the New York Times. One patient, Regina Holliday resorts to using art to bring awareness to the lack of patient’s access to their own medical records.
There are many reasons patients want access. Second opinions, convenience, instant access in a medical emergency and right of ownership—I paid for them, I own them. Other reasons patients need to view their records is for accuracy and validity. Inaccurate record keeping has even caused the EHRI Institute to cite incorrect or missing data in EHRs and other health IT systems as the second highest safety concern in its annual survey, outlining the Top Ten Safety Concerns for Healthcare Organizations in 2015.
Healthcare system executives, from CIOs to CEOs are very aware of the increasing requirements from patients asking for their records and the various state and federal laws that come into play. However, they are also aware that by making it too easy for patients to access records they risk liability and HIPAA issues. They also don’t want to provide documents that can easily enable cost comparisons or raise questions about charges.
Riding the wave of interest in accessing personal medical records are organizations like Get My Health Data. Org. The organization was founded in June 2015 as a collaborative effort among leading consumer organizations, healthcare experts, former policy makers and technology organizations that believe consumer access to digital health information is an essential cornerstone for better health and better care, coordinated by the National Partnership for Women & Families, a non-profit consumer organization. On July 4 it launched #DataIndependenceDay to create awareness for the HIPAA law which states that patients must be granted access to their health information with very few exceptions. An update to those laws that was finalized in 2013 extends these rights to electronic health records.
Despite the introduction of personal health records (PHRs), Blue Button technology and product introductions from blue chip technology leaders, such as Microsoft and Google, there has been no significant, unifying technology to ignite pent up demand for their medical records by consumers. This lack luster interest and ongoing interoperability issues might be the unifying force to drive many consumers to consider Personal Health Information Exchanges (PHIEs) as an alternative to EHRs and Health Information Exchanges (HIEs) that unnecessarily duplicate data and risk HIPAA violations.
Will PHIEs Ignite the Patient Record Access Movement?
Frost & Sullivan, in its research report, “Moving beyond the Limitations of Fragmented Solutions Empowering Patients with Integrated, Mobile On-Demand Access to the Health Information Continuum”, identifies personal health information exchange (PHIEs). They are described as providing individual patients, physicians, and the full spectrum of ancillary providers with immediate, real-time access to medical records regardless of where they are stored by using an open API.
The PHIE can provide access to the entirety of an individual patient record, regardless of the number of sources or EHR systems in which the patient data resides. This technology is made possible through fully interoperable integration servers that can access any EHR system with available APIs and portray the integrated data in a viewable, secure and encrypted format on a mobile device.
By leveraging the powerful simplicity of open APIs, PHIE technology can also access medical records in a way that is much more comprehensive than the closed EMR portals commonly used by doctors’ offices. Despite their pervasive use, these portals are cumbersome and expensive for patient’s use. The portals also include the same lack of interoperability that plagues hospital EHR systems.