The following note appeared a day of so ago.
HDM Breaking News, February 18, 2011
Federal agencies will sponsor a two-day workshop, April 5-6 in Bethesda, Md., on long-term preservation and management of electronic health records.
Sponsors include the National Institute of Standards and Technology, National Institutes of Health/National Library of Medicine, Department of Veterans Affairs, and the National Archives and Records Administration. Presenters include renowned informaticists and CIOs in addition to federal policymakers.
Registration soon will be available at http://ddpehr.nist.gov/home.php.
Here is the description of the workshop from the web-site above.
Workshop on Long-term Preservation & Management of Electronic Health Record
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
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There are a huge number of issues raised here and there is no doubt that exactly the same issues apply in Australia.
When you consider that there are already General Practice Systems in Australia that have well over a decade’s worth of information stored already every year that goes by makes these records more valuable and potentially more useful.
At present we have no agreed Standards for the storage and formatting of Health Information that permits portability of the information and access to that information in a useful way into the future.
This looks like a job that the giant intellects in NEHTA should really address and sooner rather than later. Maybe a similar workshop in Australia, after attending the US workshop might not be a bad idea?