Background: 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.

Challenges: 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.

Actions: 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

Participants: Policy makers, EHR experts, hospitals, laboratories, pharmacies, consumers, attorneys, representatives of CMS and ONC