Archiving the Phenome: Clinical Records Deserve Long-term Preservation
- Correspondence: Dr. Milton Corn, 6705 Rockledge Drive, Suite 301, Bethesda, MD 20892; e-mail: <cornm{at}mail.nih.gov>
- Received 15 July 2008
- Accepted 23 September 2008
Abstract
Retention policies for clinical records are set primarily by the states, although the federal government mandates minimum maintenance periods for certain classes of patients and selected types of information. State policies vary considerably, but most jurisdictions permit many types of data to be destroyed after some period usually shorter than 10 years. Many health care organizations hold records longer than mandated, but over time much clinical data are discarded or become difficult to access. For improved care of patients and for support of research, the nation should recognize that clinical information, both paper and electronic, constitutes a valuable asset, the national phenome, that deserves long-term storage in archives that preserve both the records and access to the information. The technical and social problems of establishing archiving are formidable but offer an opportunity to exploit the potential of clinical information for public good.
Footnotes
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Small portions of this material were presented at a talk by the author on April 20, 2007, at DigCCurr2007: An International Symposium on Digital Curation Focus: “What Digital Curators Do and What They Need to Know”, Chapel Hill, North Carolina. Meeting announcement available at: http://www.ils.unc.edu/digccurr2007/.
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This paper is the work of the author, and does not necessarily reflect the views of the National Library of Medicine or the National Institutes of Health. This manuscript has been approved for publication by the Manuscript Committee of the National Library of Medicine.
