Electronic health-related patient information is vital for clinical care and medical research. However, systems interoperability for preservation, storage, and accessibility of such health data have not yet been defined. Clinical data in digital form represents a "digital library," and inherits all the same administration and technical issues faced by digital libraries in other fields: what to retain and for how long; how to handle obsolescence of hardware and software; interchange of information; costs; assignment of responsibility; standards. In addition, clinical data involves issues of privacy, legal constraints, economics, and data ownership that complicate preservation even further. If preservation of clinical information is not addressed, valuable and irreplaceable information will become inaccessible, or disappear over time with disastrous consequences for patient care and research value. Replacing lost data even if possible, will entail huge costs for patients, clinicians, administrators, pharmacists, and potentially, the entire country's economy.
How to preserve and provide access of electronic clinical data as electronic health record (EHR) for a sufficiently long period of time to maximize value to patient, caretaker, and scientist.
To ascertain current practices for long-term preservation and lifecycle management of EHR, including an interoperability framework which supports a wide variety of data types, data formats/records, and data delivery mechanisms, while providing technology-independent infrastructure to acquire, store, search, retrieve, migrate, replicate, and distribute EHRs over time. The expected outcomes
will be the following:
Understand the current landscape on EHRs
Survey current practices and identify best strategies to be used as models
Begin to develop requirements, technologies, standards and best practices for long-term preservation and life-cycle management on EHRs
Differentiate between requirements for patient care and those for secondary use
Identify cultural and technological challenges
Catalog current legal requirements for retention of EHRs
Identify interested collaborators to form a WG on this area
Discuss possible test scenarios and datasets for collaboration and testbed
Policy makers, EHR experts, hospitals, laboratories, pharmacies, consumers, attorneys, representatives of CMS and ONC