Privacy Issues in Archives Access
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Privacy Issues in Archives Access
Anne Gilliland, MA, MLISUniversity of North Carolina—Chapel Hill
And
Judith A. Wiener, MA, MLISThe Ohio State University
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Introduction
Our background How we got interested The questions we were asked
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What methods or policies can librarians and archivists put into place that balance both the interests of scholars and families that desire access to
historical mental health records and maintain privacy as required by either federal or state laws?
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Widely-Available Digitization
Controlled environment of reading room vs. open access of the open web
Risk lessened in reading room environment even if protected information is made available by error.
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Digitize But Restrict Access
Preservationally-sound optionSaves staff time of scanning on demand
Controlled access that allows for greater sharing off-site
Records not as accessible as they would be on the open Internet
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Privacy Boards Another option to longer process
of IRB Allows institution to set up
appropriate membership to fit needs of varied interested parties (patients, families, scholars)
Creates wait for materials and may be deterrent to access by some
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Selective RedactionRequired when dealing with PHI and a covered entity under HIPAA or other legislation. 18 Protected Health Information (PHI) fields.
May be an option that is elected, even if not required by law.
Need not redact originals
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Redaction and Digitization
Proactive redaction can be very time and cost intensive.
Can make digitized materials useless, depending on level of protected information available.
Access is the key in the need for redaction.
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Careful Selection of Materials
Analyze reason for digitization-preservation or access or both?
Analyze typical researcher needs. What information is most likely needed and wanted on a widely-accessible basis.
Look for the win-win. What can we make as openly available as possible without a lot of access control or redaction needed annual reports instead of individual cases. published reports with PHI already removed
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Have these examples increased the financial or staffing costs to libraries that maintain such archival records?
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Redaction• Up front or proactive redaction may be
expensive & time-consuming• By request redaction less costly and time-
consuming but response time can be slow. • Technology may soon be available to help
redact standardized data Many historical records will still need to be
redacted by hand Redaction for digitization can make records
almost useless.
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Open Access Online
Higher risk option. Consumes staff time with selection and up-
front privacy sensitivity audits. May be an option for some record types but
not recommended for entire collections with significant privacy concerns.
Need to create policy and proceedure for redaction requests.
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Closed Access System
Lower risk, in general, because access is internal and controlled.
Allows for less-costly mass digitization solution.
Need to invest in security solutions. Ongoing costs need to be considered
Maintenance, trouble shooting, migration of files, quality control.
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Closed Access Systems
Process and logistics for collection access need to be addressed.
Encumbers staff time for very hands-on requests.
Privacy Board can be costly, dependent on location of members, time needed to meet, meeting frequency.
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Cost vs. Risk• Risk is high for unselective open
access system. Liability is far greater than initial costs of time or systems.
• Financial penalties in legislation Risk in reputation, lives, public opinion But embargoing records incurs other
costs Risk is high to the historical record,
heritage, decedents.
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How have scholars and families responded to these methods and policies instituted to both increase access yet
maintain privacy of these records?
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Families and Patients
Securing permission after the fact—Digital Library of Georgia
Genealogists’ keen interest Family members—what happened to them? Access Anxiety—the historian’s perspective
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What is Consent? What is Anonymity?
The Lacks Family Patients Like Me and other sites Rare Diseases and unusual situations
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What examples exist of how such a balance has been developed and maintained in other states? Identify the
states
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The Ceiling and the Floor
Most restrictive law will usually control. For example, in a HIPAA situation, HIPAA
preempts unless state law is more restrictive. State laws—choice of law problems and
conflicts Privacy laws not written with the historian or
archivist in mind but rather toward contemporary identity theft
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Four Approaches to Health Information
The Cigarette Papers—handled through takedown notices
Johns Hopkins (all considered covered entity—IRB/Privacy Board)
Columbia—75 year rule (not a covered entity)
University of Minnesota—use stringent HIPAA rules even for non-covered entity
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Ohio State University Medical Heritage Center
Privacy Board in development
Selective digitizationDescription of patient records series only on-line
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North Carolina Supreme Court Briefs Digitization
• Digitization of briefs submitted in NC Supreme Court cases from the late 19th century through 2000
• Project funded and work plan in development• Will be online and exposed to Google• Will use software for redacting SSNs and driver’s license
numbers• Open public records law in NC is very broad, but briefs
have been obscure• Are we a publisher when we put them online and does our
liability change?• More recent judicial opinions are often written more
circumspectly
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State Approaches: Mental Hospital Records Indiana State Archives mental hospital
records Lincoln Hospital Records—Duke University Illinois mental hospital records at State
Archives Athens Asylum records at Ohio University
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Are there examples where there have been violations that compromised privacy rights; and how have they been handled?
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Redaction and Breaches
Cigarette Papers Tentative plans in North Carolina An Industry example—Epic Wall of Shame—Breaches affecting 500 or
more individuals
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Data Breaches On the rise State breach notification law Most suits within the academic/research
community are settled or controversies never reach the point of litigation
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Re-identification Experts differ on the extent and scope of
this problem The William Weld example May not be able to completely control
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Conclusion