Presentation on theme: "Presentation to Society of American Archivists"— Presentation transcript:
1 Presentation to Society of American Archivists How Privacy-Aware Descriptive Practices Can Promote Access and Use of Protected InformationPresentation to Society of American ArchivistsAugust 14, 2014Phoebe Evans LetochaAlan Mason Chesney Medical Archives Johns Hopkins Medical Institutions
2 SAA HIPAA Issue BriefThe Public’s Right to Personal Privacy in Certain Categories of RecordsAn 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.
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 holdingsComply with the Federal Common Rule for Protection of Human SubjectsAdhere to institutional requirements for protection of health informationObserve donor agreements for protecting health privacyEven 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 systemsOther 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 ) containing patient-provider or provider-provider communications regarding care or treatment of specific patientsResearch notes regarding treatment for specific patientsPatient diagnostic imagesGray areas may include:Patient LogbooksPatient Diagnostic IndicesResearch records that include health information but were not used to make health care decisions about individuals
8 Primary holders of health information Health care providersHealth systems, hospitals, clinics, group practices, individual providersHealth care clearinghousesBilling services, community health information systemsHealth plansGroup, individual health insurance, Medicare, Medicaid
9 Secondary holders of health information Hospital archivesArchives of academic health centersCollege and university archivesCorporate archivesResearch librariesFederal repositoriesState and local repositories
10 Patient Related Materials = Hidden Collections Fewer resources devoted to processingHidden to archivists as well as researchers because not in catalogsLack of adequate description
11 Adolf Meyer Collection: Series XV Extent: 70 cubic feet (100 boxes)Sub-Series include:Patient CorrespondencePatient Index CardsMedical Records and other documents related to Special Research TopicsConsultations on Legal Cases
12 Pediatric Diagnostic Index Key tool for identifying relevant Pediatric Medical Records by diagnosis.
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.
19 What is Research?Definition of Research under the HIPAA Privacy Rule and the Federal Common RuleA 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 authorizationsSubject of health informationLegal representative of subject of health informationInstitutional authorizations for researchWaivers issued by Privacy Board or IRB for research involving living individualsResearch on decedentsReview preparatory to researchData use agreement for limited data setsOther allowable institutional uses or disclosuresTreatment, payment, and health care operationsHealth care emergencies, law enforcement and government oversight
22 Privacy Board at JHMIJoint 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 InstitutionsHealth 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 MedicineAllows research using these institutional materials when it is legally and ethically responsible to do soAdministered by the Medical ArchivesIndividuals both affiliated and not affiliated with Johns Hopkins are eligible to submit applications.
23 Analysis of Privacy Board applications at Johns Hopkins April 2003- July 2014 243 numbered cases210 approved (86% of all cases, 96% of reviewed cases)8 not approved24 application incomplete and not submitted for review (10%)
24 Analysis of Privacy Board applications at Johns Hopkins April 2003- July 2014 Researcher ProfileMostly outside researchers26% Hopkins Researchers74% Outside Hopkins (includes international researchers)
25 Analysis of Privacy Board applications at Johns Hopkins April 2003- July 2014 86 cases requested access to patient related materials (35%)Requests for patient materials have increased since 2011 to 49% of all casesPrivacy board waivers have enabled the Medical Archives to provide access to unprocessed collections
26 Phoebe Evans Letocha Presenter ALHHS/SAA HIPAA resource page Collections Management ArchivistAlan Mason Chesney Medical Archivesof the Johns Hopkins Medical InstitutionsALHHS/SAA HIPAA resource page