Research Access to Records Containing Protected Health InformationA Review of 2014 Survey Results

Emily R. Novak Gustainis, Head, Collections ServicesCenter for the History of Medicine, Countway Library, Harvard Medical SchoolEmily_Gustainis@hms.harvard.edu

About the Survey

Maxwell Finland papers, H MS c153. Box 18, folder 5: Erythromycin and Ilosone, Food and Drug Administration: Ilotycin cases, 1952. Collection contains correspondence, pamphlets, articles, invoices,

notes, charts, photographs, and graphs supporting drug studies from the 1940s through the 1970s.

Oliver Cope papers, H MS c177: Box 6, folder: Q-Z. Contains Massachusetts General Hospital-related patient records on thyroid research, treatment, and surgical technique. Records include operation sheets, correspondence, reports, photographs

• Open four months (January – April 2014)

• 63 respondents• 50 opted to self-identify as:• A professor/instructor of history, the history of

medicine, or the history of science (44%)• A student (any field) (22%)• A physician or healthcare provider with an interest in

the history of medicine or science (16%)• A professor/instructor of another Humanities sub-

discipline or a different discipline (10%)• A researcher (no academic affiliation) (6%)• A librarian or archivist (2%)

Awareness of Collection Restrictions

59.65% (n=57) learned about the presence of restricted records for the majority of the collections they used (or were interested in using) from a librarian or archivist

77.37% percent (n=61) respondents have used finding aids that included information about whether or not patient or otherhealth-related records in the collection hadaccess restrictions

Variables

What are the “Most Useful” formats for archivists to identify?

1. Patient histories (91.67%)2. Case files3. Correspondence4. Patient questionnaires5. Patient summaries6. Consultation files7. Family medical histories8. Admission/registration record9. Diagnostic indices10.Photographs/medical imaging11.Informed consent records

(43.75%)

12. Autopsy records (40.43%)13.Lab notebooks14.Prescription books/logs 15.Research protocols16.Hospital policies17. Graphs and charts18. Surgical logbooks19. Microscope slides/specimens20. Billing information21. Genetic testing records22. Immunization records23. Insurance records (12.5%)

Thank you!(And how can we help?)