Survey
* Your assessment is very important for improving the workof artificial intelligence, which forms the content of this project
* Your assessment is very important for improving the workof artificial intelligence, which forms the content of this project
Journal of the American Medical Informatics Association Volume 16 Number 1 1 January / February 2009 JAMIA Perspectives Viewpoint Paper 䡲 on Informatics Archiving the Phenome: Clinical Records Deserve Long-term Preservation MILTON CORN, MD 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. 䡲 J Am Med Inform Assoc. 2009;16:1– 6. DOI 10.1197/jamia.M2925. Background Considered as a whole, the patient information collected by clinicians across the nation constitutes a vast, distributed library of incalculable importance to patients, to relatives, and to public health: the human phenome. Several ongoing health care and information storage developments suggest that a fresh look should be taken at the policies that govern preservation of medical records in the United States. The Incorporation of Genomics into Clinical Care Personalized medicine will involve correlations over a lifetime between the patient’s genome and phenome. (Created by the interaction of genome with the environment, the phenome consists of all the expressed characteristics of an individual, from microcellular chemistry to behavior; in health care the phenome is more loosely defined as the information gathered about the patient.) Applied genomics is also an essential element of much translational medicine Affiliations of the author: National Library of Medicine, National Institutes of Health, Bethesda, MD. 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/. 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. Correspondence: Dr. Milton Corn, 6705 Rockledge Drive, Suite 301, Bethesda, MD 20892; e-mail: ⬍[email protected]⬎. Received for review 07/15/08; accepted for publication: 09/23/08. and clinical research, and will inherently require access to clinical information. Increasing Interest in Personal Health Records (PHRs) Personal health records are not regulated by record preservation laws, and yet, each patient who elects to maintain a PHR, either personally or on someone else’s server, will surely expect to have the information available for a lifetime; in practice, some PHRs will corrupt or be lost or be replaced by newer technology and thus will require restoration from time to time from data stored in records that are preserved by law, such as clinical information in hospitals, in physicians’ offices, and in freestanding laboratory/imaging organizations. The value of PHRs will weaken to the extent that the source data becomes unavailable. Ideally, those PHRs maintained on central servers would be subject to the same retention and privacy policies that govern data held by caregiver organizations. The Progressive Shift of Clinical Information from Paper to Electronic Storage Clinical information that is born digital and stays digital already represents a large portion of what is known about each patient. With support from the public, government, technophiliac organizations such as the American Medical Informatics Association (AMIA), and those who sell such systems, electronic health record systems (EHRs) are likely to expand their currently puny penetration of the U.S. health care system over the next few years. As they do, the importance of health information technology (IT) and digital clinical information will grow rapidly. Data retention policies for digital information have been established in some jurisdictions and organizations but not universally; unless preservation polices are made explicit, digital data will seep away. 2 RAQS (Rarely Asked Questions) about Preservation of Clinical Information: Introduction Opinions will differ about how long clinical information should be preserved, but if the raison d’être of storage is benefit to health care rather than the requirements of litigation law, the ideal retention period will almost surely be seen as longer than the relatively few years now mandated for retention of most patient records. How to archive clinical data so as to preserve most efficiently the information and access to the information will require collegial resolution of complex technical and social problems, analogous to the efforts of many major libraries to develop archiving policies. Reevaluation of U.S. medical record retention policies would require consideration of a number of issues that are not often discussed. How Valuable Really Is Old Clinical Information? The EHRs and health information networks offer some interesting opportunities to provide decision support and improve patient safety, but the true extent to which access to past clinical information facilitates quotidian clinical care is not known. Previous medical records can be life-saving in certain dramatic scenarios (well-publicized by health IT advocates), but for many medical problems that occasion a visit to a doctor, the clinician might need little past medical information other than current medications and active diagnoses/problems, information that most patients could provide. The emergency department physician managing a wrist fracture today would not usually need to study last year’s in-patient chart for appendectomy. The clinical value of most information stored in medical records probably diminishes as time goes by as well. Because future genomic developments will surely require correlations with old clinical data, the value of records from the distant past for clinical care will increase in the future, but by how much remains to be seen. A cost– benefit analysis comparing expense of archiving to clinical value of yesteryear’s patient information would be illuminating, but difficult to carry out. Preservation costs could be estimated with some reliability, but measuring the contribution of past information to individual patient care would require much new and hard-to-obtain data about clinical decision processes in hospitals and offices as well as new outcome data. While the general importance of old data to individual clinical care requires some assumptions and a touch of faith, the potential value of such information to secondary use of health data for public health and biomedical research seems immense, although in this domain as well, cost– benefit data are not available. Despite the absence of cost– benefit figures, it can be argued that long-term archiving of clinical information is a socially useful policy that can benefit both individual patients and the population as a whole, and one that deserves to be initiated. How Long Should Clinical Data Be Preserved? How long to store depends on the intended use. Because some patients will encounter a clinical problem for whose management old clinical information can be crucial, a case can be made for storing clinical information at least for Corn, Archiving the Phenome the lifetime of every patient. The working assumption would be that the cost of storing more information than will actually be useful is outweighed by the value to those who will benefit at time of need. As genomics begins to suffuse clinical medicine, the argument for lifetime storage strengthens because genome/phenome correlations and the effect of environmental factors will probably appear over time in complex ways. Lifetime may not be long enough: information about genomic expression could have implications for blood relatives, including descendants, so that storage of a patient’s clinical information beyond death may continue to have value for patient care. The enormous potential of genome/phenome information for biomedical research also pleads for storage of clinical information for generations. Some period between a century and eternity is probably best. Storage for such long periods, much longer than current retention policies, will doubtless require specific provisions for archiving systems in which information is stored separately from the records maintained for quotidian care. How Much Clinical Data Needs to Be Preserved? The paper chart does not contain all of the patient’s clinical information, but what it does contain is stored more or less completely according to some local governing protocol based on institutional selection of one or more of the applicable mandated or suggested retention policies. For digital information such an indiscriminant collection policy might be overkill. Not every chest film, electrocardiogram, and hemoglobin obtained during a hospitalization deserves immortality. However, picking and choosing what to save would be a clumsy process, and for the time being, just saving everything may be more efficient. However, if storage costs become prohibitive as the terabytes accumulate, selective preservation may be a necessity. Imaging alone consumes vast stores of memory. Should the need for selectivity arise, working rules for deciding what to preserve and what to discard would require a sophisticated decision tree. What Are Current Record Retention Policies in the United States? A spottily enforced hodgepodge of laws, regulations, and recommendations currently governs preservation of clinical information.1,2 Federal laws dictate length of storage for records of certain groups (Medicare recipients, veterans, employees exposed to toxins, among others) and for certain types of data, but for most records, the mandatory retention period is controlled by each state. Rules pertaining to adults, children, those subject to hazardous exposure, and other designated subsets of patients differ from state to state. Different types of data, e.g., physician notes, laboratory reports, pathology specimens, images, are also treated differently. The U.S. Food and Drug Administration, for example, mandates storage conditions for mammograms and mammography records, although longer periods are permitted if a state so requires.3 Hospitals, clinics, free-standing organizations that provide laboratory and imaging services, and physicians’ offices may also be subject to different language. State laws are often complemented by recommendations from professional organizations1; degree of compliance to such nonbinding advice is not known, but may be significant because health information management pro- Journal of the American Medical Informatics Association Volume 16 fessionals, often associated with the American Health Information Management Association (AHIMA), play a role, sometimes major, in setting an organization’s record retention policies, and may favor AHIMA recommendations.4 Mandated storage periods vary widely; veterans’ records must be kept for 75 years but retention requirements for most record elements are well under 10 years, after which all or most of the record can be destroyed. Some record custodians elect to retain records for longer than is mandated, but doubtless the current retention system results in destruction of much phenomic information. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) privacy rules do not promulgate specific retention periods, but the pressure to avoid breach of privacy might influence some to destroy records sooner rather than later once the mandatory retention period has been reached. How the various jurisdictions arrived at this or that retention period is bemusing. Although the language of record retention laws commonly includes brief mention of benefit to patient care, the need to preserve documentation for litigation seems to be a prominent driver. In choosing retention periods, legislators were probably aware that very few malpractice suits are filed more than 10 years after the clinical event in question.5 An enlightened preservation policy for both paper and electronic records should provide guidance nationally and should focus on benefits for patient care. A health care– centric policy would in no way prejudice legal defense because care considerations call for longer storage periods than is required for purposes of malpractice law. Long-term archiving will require revision of current paper retention policies and the development of specific new processes for digital information. Reform would probably require new federal law; hoping that each of the 50 states will amend its current laws to some uniform standard seems quixotic, and voluntarism is not a promising approach. Who Watches over the Paper Records Now? Medical record librarians are responsible for managing and storing medical records in most acute care facilities and larger clinics. There are 51,000 members of AHIMA who are dedicated to the effective management of medical records.4,6,7,8 Historically associated with paper records, AHIMA now states it has interest in implementation of electronic health records as well and is involved in industry initiatives. The number of medical record librarians who have competence in maintenance and storage of information that is born digital and remains digital is not known. Medical record librarians can access digital data and commonly play a role in setting organizational retention policies for all records, but it is unlikely that they are often responsible for the physical welfare of electronic material. In office practice, record management is usually assigned to a nurse or clerical staff, although larger practices may also use a medical record librarian. Office practice is usually also covered by retention regulations, although not necessarily with the same retention periods mandated for in-patient records, and there is considerable variation among the states. Local medical associations sometimes recommend longer periods of 10 or even 25 years for defense against Number 1 January / February 2009 3 potential litigation. To what extent practicing physicians comply or are aware of mandatory or recommended retention periods is not known. On retirement of the physician, records are usually given to the physician who purchased the practice. Little is known about what actually happens when an office is closed. Some physicians give the patients a window of opportunity to obtain copies of their records for a small fee, but presumably the records are later discarded whether the patient had responded or no. The somewhat whimsical treatment of paper records in office practice will probably carry over to electronic records as office EHRs become more common unless policies and policy enforcement change distinctly. Any revision of national retention policies should pay special attention to office records, particularly as more and more care is given in ambulatory settings. Who Watches over the Digital Data? When electronic data are transferred to paper and included in the chart, the medical record librarian retains custody. When electronic information remains digital and is accessed by computer as needed, the data reside in the servers with IT personnel assuming responsibility for maintaining the system, although the record librarian may retain nominal custody in the formal organization. As EHRs become incorporated into health care, the importance of digital clinical information will grow rapidly. Even today when EHRs are still thin on the ground, vast amounts of clinical information are already electronic. The technical demands of archiving electronic data are large, and casual application of paper chart policies may not address digital data storage issues sensibly. Laboratory data, information from sensors, images, and some textual material are born digital, and the number of bytes created each year is enormous and increasing. The data in each clinical record will grow in the future as more genomic and environmental information is incorporated into clinical care. Low-cost determination of the complete genome is nigh, and likely to become a common component of clinical evaluation; the special attention the public gives to genomic data may focus attention on preservation and archiving issues for clinical data in general. De facto, therefore, electronic clinical information is in the custody of IT personnel or informaticians, although even medical centers with elaborate EHRs do not necessarily capture the electronic data generated in certain areas such as intensive care units or other “silo” operations. Some large health care delivery organizations have specified retention periods for digital data and have developed long-term storage solutions for one or another length of time, occasionally set at “forever,”4,5,8 but often those in charge seem to be assuming that such data will be preserved more or less indefinitely with little formal consideration of how this is to be done or where it all will end. Specific policies to preserve and archive electronic information are not universal, nor are there usually provisions for how to handle changes in format and software over time. Converting from one EHR system to another should include porting of most of the old information, but this can be incomplete. Some comments made by custodians of EHR data in large medical centers about data-handling when the system is changed include 4 “Switching from one EHR to another is a crude and inelegant process”; “Data is not handled very well if the system is changed”; “This is a problem. Sometimes the solution is just to toss the older data after some period.”6 Issues involved with switching EHR systems have not been confronted by many centers that are working with their first EHR system, but such systems become obsolete sooner or later, and must be replaced by new and different systems; vague optimism that software and hardware changes will be handled smoothly without loss of information should be replaced by deliberately planned archiving policies. Will the Anticipated Flowering of EHRs Gradually Eliminate Paper Records? Paper records will be important repositories for years to come despite the expected rise in use of EHRs. Even in health care enterprises with complex EHRs, much of the digital data are, surprisingly, transferred to paper for a variety of reasons.4,7 (Paper surrogates for digital information are not always complete, e.g., the radiologists’ reports do not preserve the actual image.) Perhaps this practice is merely persistence of old habits, and will wither, but it seems unfortunate: paper records have many virtues, but networked accessibility and potential for secondary use of information are gifts that IT brings and that paper cannot match. A new look at record retention policies should include explicit attention to keeping digital information digital. How Should Archiving of Clinical Information Be Carried Out? Those who now watch over clinical data are de facto librarians and will have to recognize that they face the same archiving issues that confront librarians and custodians of valuable information in other domains. Librarians have worried about archiving of digital information for years and are making some headway, although no general solution has emerged. A recent solicitation by the National Science Foundation is focused on research issues relevant to preservation and access of information for science and engineering.9 Archiving clinical information will present even more difficult challenges because the information is part paper and part digital, and because of the distributed ownership of the information, the special needs for privacy, the complexity of the clinical data, changes in methods and normal values, authenticity issues, and both the diversity and the rapid obsolescence of the hardware and software with which clinical information is handled. Another important complicating issue for archiving of electronic information is the fragmentation of responsibility and diversity of technical systems for varying data types within a single enterprise: laboratory, pathology, imaging, sensor information, and other forms of data are often maintained by the unit performing the service, while the EHR proper is the responsibility of the organization’s IT department. A true national phenome would need specific provisions for including information stored in “silos” as well as in the medical record proper. Further, preservation alone is not enough; efficient access to the system for authorized users must also be provided. Corn, Archiving the Phenome A single distributed database of clinical data for the nation would have some distinct advantages for patient care and for research, but is not a probable solution within the complex and fragmented U.S. health care system. If archiving becomes the norm, a variety of technical solutions would be purchased or developed as thousands of managers in medical centers, offices, etc. decide on the best fit for their information stores. (A simple Internet search easily nets a plethora of businesses offering technical systems for longterm information storage.) A single institution could end up owning a handful of archiving storage systems if no central planning within the organization guides the choices made by the semi-autonomous record keepers in the various departments. Traditionally, each health care organization makes it own decisions about how to manage its clinical records, and such independence is likely to continue. However, if the clinical information stored by an enterprise is also viewed as one element of a huge library, the national phenome, some consensus on standards that would permit maximum possible interoperability among archiving systems (not necessarily for the working systems used in daily care) would in itself have high value, although differences in ontology, data types, laboratory tests, etc. pose formidable obstacles. Should archiving clinical records become a national concern, the health care organizations affected would do well to emulate the collegiality of the libraries and organizations that work together to seek archiving solutions for important information collections in science, engineering, and the humanities.10,11 Even if information interchange among institutions remains an ever-receding horizon for technical and cultural reasons, thoughtful archiving by individual enterprises would in itself be a valuable asset for patients and for research. What about the Information in Personally Controlled Health Records (PCHR)? The PCHRs, in which the patient’s clinical data from all sources and perhaps other personal information are in a single patient-controlled file, are much discussed at present, although not yet common. If they become widely popular, as some believe will happen, PCHRs could become the single most complete, most useful source of phenomic information available, whether for patient care or for research.12 When maintained by third parties such as Microsoft, Google, Dossia, and others, the information is not subject to either the retention or the privacy policies that govern medical records created by care providers. Clearly, the patients who elect to use such systems deserve protection of information analogous to that afforded records maintained by hospitals and offices, but neither legislation nor recommendations are currently in place to protect PCHR data. The PCHRs should be part of any national clinical data archiving policy, but ways and means remain to be determined. Who Should Take the Lead in Discussing the Archiving Issues? If the issue came to be seen as high priority, AMIA would be an excellent candidate to organize an approach. Intelligent consideration of the problem requires sophistication in IT, informatics, clinical care, public health, clinical and transla- Journal of the American Medical Informatics Association Volume 16 tional science, and privacy issues, all areas in which AMIA has great expertise. Multiple parties, including the public, would have to be involved in the discussion to facilitate buy-in for any new data preservation recommendations to health care organizations and to Congress. What Has Been Done about Archiving of Clinical Information to Date? The public sector is already archiving some medical information. In the United States, the Department of Defense (DOD) has made arrangements for the National Archive and Records Administration (NARA) to maintain military records, which include clinic information and summaries for admissions to medical treatment facilities; access to complete in-patient charts is also usually possible.13 In recent years, some records are being transferred to the Veteran’s Administration (VA). The NARA and its affiliates apparently intend to keep the records “permanently.” The NARA also maintains medical records of civilians in the DOD, but such records would not normally have details of most hospitalizations or private physician encounters by civilians. The NARA system was created to store paper records, but is now digitizing some documents for back-up purposes. The web site for NARA does not describe what the DOD and NARA are doing or intend to do about medical information that exists only in digital form, as will increasingly become the norm as the DOD expands its use of AHLTA, the DOD electronic health record system. The VA, which has an extensive electronic record system, and therefore large amounts of electronic clinical data, has recently recognized that there is an archiving problem for digital data, and is in the early stages of addressing the issue.8 The VA record retention policy ostensibly permits destruction of the paper file after 75 years, but all medical records of veterans are under moratorium against destruction at this time. The Center for Medical Services (CMS) has vast amounts of Medicare and Medicaid information, some of which is available for research purposes. However, CMS data are not intended to be a full medical record set, and as a “clinical phenome” would be considered significantly incomplete. In the private sector actual archiving practices often differ from mandated or recommended policies, but comprehensive information about what is happening in the United States is not available. However, a recent survey sent to health information management professionals in several hundred American hospitals believed to be among the “most wired” revealed an interesting and idiosyncratic variety of current practices for both paper and electronic information.4,7 Many organizations keep records far longer than legally mandated, and many claim “permanent” retention for a potpourri of reasons, while others destroy paper and/or electronic information after varying lengths of time. Some keep all information active and available; some use an archiving system, most commonly microfilm; some preserve certain record items and/or types of data selectively. The survey suggests that much clinical information is, indeed, stored for considerable periods of time in the United States, although such practices are not universal, and the archiving policies do not commonly take advantage of IT for purposes of facilitating access. Number 1 January / February 2009 5 However, ad hoc archiving by enterprises that choose to do so helps preserve records for some patients but does not exploit the potential value of archives. Although some organizations decide not to throw anything away, others do discard at least some types of information. The overall result is unpredictable, does not constitute a national policy, and has relatively little value for secondary use of the information. Archiving clinical information as a national goal has not received much attention. Archival issues for special sets of data such as images14 and laboratory data15 have been discussed, and a national system for storing information from pathology laboratories has been installed in the Netherlands.16 However, relatively little has been published about the preservation of the general medical record other than a paper in 2004 by Hanauer,17 and one in 2006 by Scott18 on preservation of e-records that discussed the relevant issues and noted, as well, that Pubmed had only 3 pertinent publications at the time. Long-term preservation has evoked more interest in other nations, including Belgium19 and Sweden20 inter alia, and a recent announcement indicates that Finland intends to install a national electronic health record archive.21 Who Will Pay for Archiving? The expense of archiving clinical records will probably have to be absorbed by the hospitals, service organizations, and physicians who now maintain clinical data, although some federal funding might become available if executives and legislators recognize the potential benefits to the public. Perhaps patients and professionals attempting to retrieve information will pay some fee, and those who wish to access the archived data for research purposes may also end up paying something for the information. To What Extent Should the Archived Phenome Be Available for Research Purposes? The argument for archiving clinical information will rest initially and primarily on the potential benefits to patient care. Self-evidently, vast stores of clinical information also represent an extraordinary resource for biomedical research; such secondary use of clinical information has incalculable potential for advancing medical science, and may prove to be the major payoff of EHRs. Insulating such an archive from all research purposes would be short-sighted and harmful to the public. However, the extent to which the archived phenome would be a research resource is a social and cultural issue that transcends the clinical and technical issues of archiving and will require wide discussion of the proper balance between individual and social goods. Who Will Monitor Compliance with Long-term Retention Policies? Monitoring will depend in large part on how the new policy was born. If federally mandated, the government will monitor it, either directly or by delegation to some private sector organization or a private-public partnership. If archiving the phenome becomes recognized as a necessity and is promulgated by a potpourri of accrediting groups, associations, and state legislatures, monitoring of compliance is also likely to be fragmented and the responsibility of a variety of entities. 6 Who Cares about Archiving Clinical Information as a General Imperative? In the United States, much attention is paid to record retention through local creation of processes that seem to comply with law or prudence and often focus on malpractice issues, but the view that this information, considered as a whole, is a priceless asset, is rare. In the private sector, few have expressed any concern, probably because the existence of a problem for either paper or electronic data is not recognized. Many patients believe, mistakenly, that their medical records are preserved for their lifetimes, and many also believe, as do their physicians, that information in a computer is available forever, again mistakenly. Support for maintaining records for long periods will probably have to come from patients, clinicians, and biomedical scientists, and it is to these groups that educational efforts should be addressed. Support for archiving such information so that it is accessible when needed and useful both for patient care and for secondary use will require additional sophistication. What Next? Little attention will be paid to archiving unless the value of doing so is widely acknowledged. If nothing is done now, the need may slowly gain appreciation as clinicians and patients notice that patient information is becoming unavailable when new EHR systems replace older ones, as hospitals close, as stored data become unreadable, as physicians retire and shut their offices, as laboratory and imaging organizations fold or are acquired. Paper records as well, now sometimes destroyed after a few years or exiled into microfilm, may find themselves in demand years later because of a genomic advance. Whether some professional organization or government will see archiving the phenome as a national goal remains to be seen. Even if no national archiving process emerges, much good would come from ad hoc decisions to embrace archiving in individual organizations, particularly large ones such as health maintenance organizations, and large clinical referral centers. Conclusion The information generated during patient care constitutes a valuable information resource, the phenome, of value to patients, the public, and biomedical science. Preserving clinical information for generations rather than the ephemeral periods now required will entail complex revision or creation de novo of information retention policies for both print and digital data. Currently, paper records are often destroyed after fewer than 10 years, and much of the information is lost. Further, use of IT for accessibility and networked interchangeability of archived information have hardly been addressed. For the relatively new phenomenon of electronic clinical information, custodial care is largely appropriate so far but information loss over time is also a looming issue. Properly managed, the clinical records of our patients constitute an invaluable library that should not be burned, nor allowed to fade away. References y 1. Fletcher DM, Rhodes HB. Retention of Health Information (Updated). AHIMA Practice Brief, Web extra 6/24/02. Available at: http://library.ahima.org/xpedio/groups/public/documents/ Corn, Archiving the Phenome 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17. 18. 19. 20. 21. ahima/bok1_012545.hcsp?dDocName⫽bok1_012545. Accessed April 28, 2008. Calloway SD. HIPAA Advisory: Record Retention Periods. Available at: http://www.hipaadvisory.com/regs/recordretention.htm. Accessed April 28, 2008. Mammography Quality Standards Act (MQSA) (As Amended by MQSRA of 1998 and 2004). Available at: http://www.fda. gov/cdrh/mammography/mqsa-act.html. Accessed April 28, 2008. Rhinehart-Thompson LA. Record retention policies among the nation’s “most wired” hospitals. Perspect Health Inf Manag 2008;10:5– 8. California Hospital Association. Records Retention Guide For All Health Care Providers. Ed 7. 2002:7. Book available for order at: www.calhospital.org/public/pubs/gms/index.html. Accessed November, 2008. American Hospital Information Management Association. AHIMA FACTS. Available at: http://www.ahima.org/about/ about.asp. Accessed November, 2008. Rhinehart-Thompson LA. Storage media profiles and health record retention practice patterns in acute care hospitals. Perspect Health Inf Manag 2008;16:5–9. Personal communications obtained by contacting digital record experts in five medical centers with well-established EHRs. Peter Elkin, M.D. 2007, Gilad Kuperman, M.D. 2007, Clement C. McDonald, M.D. 2007, Blackford Middleton, M.D. 2007, Paul Tang, M.D. 2007. National Science Foundation solicitation. Sustainable Digital Data Preservation and Access Network Partners (DataNet). Available at: http://nsf.gov/funding/pgm_summ.jsp?pims_ id⫽503141. Accessed May 1, 2008. Digital Curation Center. Available at: http://www.dcc.ac.uk/ about/. Accessed May 6, 2008. Digital Library Federation. Available at: http://www.diglib. org/preserve.htm/. Accessed May 6, 2008. Mandl KD, Kohane IS. Tectonic shifts in the health information economy. N Engl J Med 2008;358:1732–7. The National Archives: Military and Medical Records. Available at: http://www.archives.gov/veterans/military-service-records/ medical.html. Accessed May 1, 2008. Erickson BJ, Persons KR, Hangiandreou NJ, James EM, Hanna CJ, Gehring DG. Requirements for an enterprise digital image archive. J Digit Imaging 2001;14:72– 82. Brimhall BB, Hall TE, Walczak S. Historical return on investment and improved quality resulting from development and mining of a hospital laboratory relational database. AMIA Annu Symp Proc 2006:865. Casparie M, Tiebosch AT, Burger G, et al. Pathology databanking and biobanking in The Netherlands, a central role for PALGA, the nationwide histopathology and cytopathology data network and archive. Cell Oncol 2007;29:19 –24. Hanauer D. Information storage for health-care providers: it’s not as simple as it seems. J Med Pract Manage 2004;20:7–12. Scott RE. e-Records in health—preserving our future. Int J Med Inform 2007;76:427–31. Epub 2006 Nov 13. France FH, Beguin C, van Breugel R, Piret C. Long term preservation of electronic health records. Recommendations in a large teaching hospital in Belgium. Stud Health Technol Inform 2000;77:632– 6. Wigefeldt T, Larnholt S, Peterson H. Development of a standardized format for archiving and exchange of electronic patient records in Sweden. Stud Health Technol Inform 1997;43: 252– 6. Wicklund E. EMC to build Finland’s patient record data archives. Healthcare IT Newsday Europe. Friday, March 18, 2008. Available at: http://healthcareitnews.eu/content/view/932/ 39/. Accessed May 2, 2008.