How Privacy-Aware Descriptive Practices Can Promote Access and Use of Protected Information

1. How Privacy-Aware Descriptive Practices Can Promote Access and Use of Protected Information Presentation to Society of American Archivists August 14, 2014 Phoebe Evans Letocha Alan Mason Chesney Medical ArchivesJohns Hopkins Medical Institutionspletocha@jhmi.edu

2. SAA HIPAA Issue Brief The 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

3. 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.

4. 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

5. 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

6. 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 images Gray 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

7. Patient Records as Hidden Collections

8. Primary holders of health information • Health care providers Health systems, hospitals, clinics, group practices, individual providers • Health care clearinghouses Billing services, community health information systems • Health plans Group, individual health insurance, Medicare, Medicaid

9. 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

10. 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

11. Adolf Meyer Collection: Series XV • Series 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

12. 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

13. Victor McKusick Collection Scope 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

15. 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

16. Hugh Hampton Young Collection http://www.medicalarchives.jhmi.edu/finding_aids/hugh_young/hugh_youngd.html

17. William Osler Collection: Notes on Medical Conditions http://www.medicalarchives.jhmi.edu/finding_aids/william_osler/william_oslerd.html

18. Access Anxiety as a barrier to research

19. 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.

20. 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

22. 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.

23. 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%)

24. 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)

25. 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

26. Presenter Phoebe Evans Letocha Collections Management Archivist pletocha@jhmi.edu Alan Mason Chesney Medical Archives of the Johns Hopkins Medical Institutions ALHHS/SAA HIPAA resource page www.alhhs.org/hipaa_sthc_alhhs.html