Imagine a bookcase. Picture it holding all of your journals, notes, drawings, and photographs: things that wouldn’t exist without you. Whenever you feel like it, you can take anything from this shelf and simply return it when you’re done. Taking a trip? Maybe you bring a journal along. Want to lend notes to a friend? Easy enough. You control what’s on display, who has access to it all, and when (and where) it’s time to use something.
Now imagine that someone has suddenly put a lock on your bookcase. You can only use what’s on your shelves under very specific conditions, and someone else set those conditions. Your photos cannot be shared with anyone else. Your journals won’t be going on any trips now. You still “own” everything in the bookcase, but you are forced to use the contents only in pre-approved ways and you are unable to switch to a new bookshelf. This concept is at the crux of an ongoing fight over “Interoperability” in the healthcare space. Interoperability is a way for “systems” to interface with each other in a standardized fashion, like sharing a journal with a friend or putting a new set of drawings or notes into your bookcase.
The Current Climate
We now live in a world where our medical records are stored in the cloud. We live in a time when a growing percentage of people rely on devices to monitor their health and wellness activity at all hours of the day. This influx of information creates a higher resolution picture of a person’s digital health footprint, in ways that were largely considered science fiction only a decade ago. The benefits of this are only beginning to be seen, but the battle over interoperability comes down to a question of access. Tech companies and Health Care giants have a wealth of data that belongs to the individual, but that “bookcase” is difficult to access, and often unsharable to parties who could use the data for good.
To protect data access and to fight for interoperability in the Electronic Health Record (EHR) space, the CARIN Alliance has called upon the U.S. Office of Management and Budget to approve and release rules proposed by the Department of Health and Human Services with no further delay. This, in part, was response to the EHR vendor Epic requesting CEOs and Presidents of profit-seeking hospital systems to jointly sign a letter expressing their disapproval, citing a concern over intellectual property rights and privacy.
It’s Your Right
At its core, interoperability offers Accessibility, Portability, and Security. We consider Accessibility the right to your data at any point: no hoops to jump through and always at your fingertips. Portability means the right to take your data anyplace you want, with no worrying about exports, imports, or formatting. With all medical information, Security is paramount and maintaining key safeguards to your data means access only at your discretion and only to whomever you choose.
A Note from Pavillio: Taking a Stance
This is an important issue to all of us at Pavillio. We firmly believe data access should be determined by those who own it: putting agency, information, and power into the hands of those receiving care. Our platform was designed from the ground-up to allow every person who receives care through Pavillio a window into their own information. Pavillio is also committed to increasing this accessibility in a secure, interoperable, and standardized fashion. No person should have to stress about who has their data and how they can access it.
We are likely to hear the new rule proposal at the upcoming HIMSS conference in March, given HIMSS has taken a stance defining and calling for interoperability rules. Pavillio stands with the CARIN Alliance and hope that the ruling laid out is one that supports the immediate call for interoperability within this space.
The care recipient is the foundation of who we are, and we hope that this industry can come together for the sake of individuals and not for giant corporations.