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2013-07-07

Legacies in Data

We are rapidly moving to comprehensive use of electronic health record (EHR) systems. But what happens to existing, i.e. legacy, data when the process is complete? That's actually a vexing issue for the following sample of reasons:

  • EHR vendors don't like these data because of potential errors creeping in from migrating to a new platform. 
  • Government policy mandates that pediatric data to be available for up to 30 years (age 18 plus 12 years because of chronic medical conditions). 
  • Corporate attorneys fear malpractice suits. If data exist in any form, it's "discoverable"--meaning that it can be used in a malpractice case. 
  • New clinical protocols often come from mining years of data, often using data that no one previously thought was very useful. 
Can we reconcile these conflicting factors? But wait, let's pile on more. All patients have records in some form. In many cases where they are electronic and supported by a commercial EHR vendor, that vendor may not be happy to lose the contract if the organization wants to move to a new vendor. Sometimes the medical records may be held in a proprietary format that requires special knowledge in accessing them. And while the organization may "own" their data, they may no longer have easy access because the old software license has been allowed to expire. These migrations are part of the transformation of medical records and their related data as the nation moves to systems that support wider use of these records for improved clinical care--aka Meaningful Use. The list goes on, and on, but these are the highlights. 

If we could create a "safe harbor" for these records and their data, we could accomplish the following: 
  • Make legacy data available for researchers to study treatments and outcomes to develop new protocols that will improve clinical outcomes--that's saving more lives. 
  • Provide a way for clinicians to access older data on the patient they are treating to understand that person's medical history and inform their treatment--that's better outcomes. 
  • Permit the development of records retention protocols that support the above without opening the clinicians and their organizations to data fishing expeditions in litigation--that can lower tempers and costs. 
  • Provide a set of technologies based on open source software that offer continued access that helps everyone but advantages no one--that's a win for all. 

All the above are possible, but will require discussion and cooperation across the groups involved:

  • Software vendors to provide documentation of their data schemas, perhaps supported by a shared cost pool. 
  • Clinical care organizations to define what they need for reaching back to use legacy data. 
  • Government and other convening organizations to develop comprehensive policies on record retention and availability--much like the current evolution of meaningful use policies. 
The potential solutions are available, but it will take some hard work to reach them. 

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