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How Privacy-Aware Descriptive Practices Can
Promote Access and Use of Protected Information
Presentation to Society of American ArchivistsAugust 14, 2014
Phoebe Evans LetochaAlan Mason Chesney Medical Archives
Johns Hopkins Medical [email protected]
SAA HIPAA Issue BriefThe Public’s Right to Personal Privacy in Certain Categories of Records
An individual’s right to privacy with regard to certain information—such as records mandated by government, attorney-client records, and medical records—historically has been weighed against the public’s right to information. Personal privacy should be respected throughout an individual’s lifetime in appropriate ways. Documents recording private information about living Americans should be disclosed involuntarily only when disclosure accomplishes a greater public purpose. At the same time access to documents that contain private health information may be necessary for historians and other researchers who create significant and sometimes policy-shaping work based on these primary sources, and therefore a balance must be struck between privacy concerns and access to such records. http://www2.archivists.org/sites/all/files/0814-1-III-A-IssueBrief-HIPAA.pdf
Definition: Protected Health Information •PHI is individually identifiable health information
transmitted or maintained in any form or medium (electronic, oral, or paper) by a covered entity or its business associates, excluding certain educational and employment records and excluding information on those individuals who have been deceased for longer than 50 years.
Other protections for health information
Repositories within HIPAA covered and non-covered entities must also:• Comply with state laws applying to medical records and health
information in holdings• Comply with the Federal Common Rule for Protection of Human
Subjects• Adhere to institutional requirements for protection of health
information• Observe donor agreements for protecting health privacy• Even if not subject to HIPAA, examine the ethical considerations related
to the access and use of health information
Information may still be protected by State Medical Records Statutes
HIPAA does not define the term “Medical Record”
Medical records traditionally include:• Unit medical record, whether paper or electronic, usually held by hospital medical
records office or other provider based centralized filing systems• Other records used to make health care decisions about the individual patient
Determining if information came from a medical record
Medical Records could also include:• Correspondence (including email) containing patient-provider or provider-provider
communications regarding care or treatment of specific patients• Research notes regarding treatment for specific patients• Patient diagnostic imagesGray areas may include:• Patient Logbooks• Patient Diagnostic Indices• Research records that include health information but were not used to make health
care decisions about individuals
Primary holders of health information
• Health care providersHealth systems, hospitals, clinics, group practices, individual providers
• Health care clearinghousesBilling services, community health information systems
• Health plansGroup, individual health insurance, Medicare, Medicaid
Secondary holders of health information
• Hospital archives
• Archives of academic health centers
• College and university archives
• Corporate archives
• Research libraries
• Federal repositories
• State and local repositories
Patient Related Materials = Hidden Collections
• Fewer resources devoted to processing•Hidden to archivists as well as researchers because
not in catalogs• Lack of adequate description
Adolf Meyer Collection: Series XVSeries XV• Extent: 70 cubic feet (100 boxes)• Sub-Series include:
• Patient Correspondence • Patient Index Cards • Medical Records and other
documents related to Special Research Topics
• Consultations on Legal Cases
http://www.medicalarchives.jhmi.edu/sgml/amg-d.htm
Pediatric Diagnostic Index
Key tool for identifying relevant Pediatric Medical Records by diagnosis.
http://www.medicalarchives.jhmi.edu/finding_aids/edwards_park/edwards_parkd.html
Victor McKusick CollectionScope and Content:The Victor McKusick Collection spans his entire career at Johns Hopkins. It documents his various activities as clinician, researcher, teacher, and administrator. The collection includes professional correspondence, research data, photographs, lecture notes, financial records, student records, reprints, manuscripts, audio tapes, committee minutes, patient records, slides, diplomas, and awards. Also included are family papers, including biographical information, undergraduate notes, and transcripts of interviews with McKusick and family members.
http://www.medicalarchives.jhmi.edu/papers/mckusick.html
Records of the Brady Urological Institute
Entire Collection consists of Medical Records.
Description prepared by Julie Adamo, National Library of Medicine Associate Fellow in 2012.
http://www.medicalarchives.jhmi.edu/finding_aids/brady_institute/brady_instituted.html
Hugh Hampton Young Collection
http://www.medicalarchives.jhmi.edu/finding_aids/hugh_young/hugh_youngd.html
William Osler Collection: Notes on Medical Conditions
http://www.medicalarchives.jhmi.edu/finding_aids/william_osler/william_oslerd.html
What is Research?
Definition of Research under the HIPAA Privacy Rule and the Federal Common Rule
• A systematic investigation, including research development, testing, and evaluation, designed to develop or contribute to generalizable knowledge.
Authorizations for access under the HIPAA Privacy Rule
• Individual authorizations – Subject of health information– Legal representative of subject of health information
• Institutional authorizations for research– Waivers issued by Privacy Board or IRB for research involving living individuals– Research on decedents– Review preparatory to research– Data use agreement for limited data sets
• Other allowable institutional uses or disclosures– Treatment, payment, and health care operations– Health care emergencies, law enforcement and government oversight
Privacy Board at JHMI
• Joint institutional board of The Johns Hopkins Hospital and the Johns Hopkins University schools of Medicine, Nursing, and Public Health for access to records, data, and information held by:– Alan Mason Chesney Medical Archives of the Johns Hopkins Medical Institutions– Health Information Management Division of The Johns Hopkins Hospital (for access to medical
records created more than 50 years ago)– Department of Art as Applied to Medicine
• Allows research using these institutional materials when it is legally and ethically responsible to do so
• Administered by the Medical Archives• Individuals both affiliated and not affiliated with Johns Hopkins are eligible to submit
applications.
Analysis of Privacy Board applications at Johns HopkinsApril 2003- July 2014
• 243 numbered cases • 210 approved (86% of all
cases, 96% of reviewed cases)
• 8 not approved • 24 application incomplete
and not submitted for review (10%)
20032004
20052006
20072008
20092010
20112012
20132014
0
5
10
15
20
25
30
total number of cases
number approved
number de-clined/on hold
Analysis of Privacy Board applications at Johns HopkinsApril 2003- July 2014
Researcher Profile• Mostly outside researchers – 26% Hopkins Researchers– 74% Outside Hopkins (includes
international researchers)47%
8%
25%
20%
Rank
Faculty
Student: Undergraduate
Students: Graduate and Postdoc
Independent and others
Analysis of Privacy Board applications at Johns HopkinsApril 2003- July 2014
• 86 cases requested access to patient related materials (35%)– Requests for patient
materials have increased since 2011 to 49% of all cases
• Privacy board waivers have enabled the Medical Archives to provide access to unprocessed collections
0
20
40
60
80
100
120
Patient Related MaterialsNot Patient Related
Presenter
Phoebe Evans LetochaCollections Management [email protected]
Alan Mason Chesney Medical Archives of the Johns Hopkins Medical Institutions
ALHHS/SAA HIPAA resource pagewww.alhhs.org/hipaa_sthc_alhhs.html