Download Clinical Records Deserve Long

Survey
yes no Was this document useful for you?
   Thank you for your participation!

* Your assessment is very important for improving the workof artificial intelligence, which forms the content of this project

Document related concepts

Patient safety wikipedia , lookup

Rhetoric of health and medicine wikipedia , lookup

Electronic prescribing wikipedia , lookup

Transcript
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.