I have been blogging about interoperability between hospital EHRs for nine years. Here's my first note that used this term: Do Hospitals Really Want Interoperable E-Health Records?. I believe that patients should have the right to download a copy of their EHR records and be able to provide it to other hospitals when necessary. This is sometimes referred to as health data portability (see, for example: Hospitals as a Major Barrier to the Pursuit of EHR Interoperability). Warning: if x-ray and pathology test results and digital images are included in such a download, such files may be huge. However, you can now buy a four terabyte external drive for $120. In this same light, Google, Facebook, Twitter, and Microsoft have now initiated a Data Transfer Project, offering data portability between and among these web services (see: Google, Facebook, Twitter, and Microsoft unite: Data Transfer Project promises portability between services). Below is an excerpt from the article:
Many...should be familiar with Takeout, ostensibly now called "Download your Data," which allows you to back up a copy of all the information associated with your account for most of Google's services. Right now you can even use it to transition your Drive storage between providers, but thanks to the upcoming open-source Data Transfer Project....that data may someday be as portable as your phone.... [T]he GDPR mandates data portability so Google didn't have much of a choice—though it could have easily made a minimum, token effort. With Facebook, Twitter, and Microsoft jumping on board for compatibility, the project is making significant progress. The Data Transfer Project can't unify the different proprietary APIs used by services across the web, but it can make tools that are inter-compatible between them, providing developers and users with a set of standardized data formats. So far the project has constructed adapters for seven different services across five data types. It doesn't require anything so tedious or insecure as a manual download and subsequent re-upload, either. The Data Transfer Project allows for services to make the transfer between themselves directly, service-to-service, using a high-security protocol and privacy-protecting encryption. And since it's open source, the code can be inspected and audited by researchers and enthusiasts alike to ensure that user security and liberty is being protected. You can even review, download, and run the framework yourself for your own projects if you so choose....Contributors have already built support for photo, mail, contacts, calendar, and task data formats for APIs available from Google, Microsoft, Twitter, Flickr, Instagram, Remember the Milk, and Smugmug.
Don't expect to be able to download your medical records any time soon and I am not actually advocating for such an option. However, EHR interoperability among hospitals is critical, particularly for patients with unusual diseases or aggressive neoplasms (see: Promoting Interoperability (PI)). In these latter cases, such a record transfer should include all available digital imaging studies from both radiology and pathology, if available (see: FDA Approves the Philips Digital Pathology WSI Solution for Primary Diagnosis). Incidentally, second opinions for complex cases, particularly cancer patients, are increasingly common and should be reimburable (see: Subspecialty Second Opinions Often Critical to Patient Care). These costs could be waived if the patient is transferred to the consulting hospital. Incidentally, providing co-access to a patient's EHR records in the case of a local hospital and a cancer center would be an ideal scenario for improving the diagnosis and continuing care of cancer patients throughout the country.