1. Research Access to Records Containing Protected Health Information A Review of 2014 Survey Results Emily R. Novak Gustainis, Head, Collections Services Center for the History of Medicine, Countway Library, Harvard Medical School Emily_Gustainis@hms.harvard.edu

2. 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.

3. 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

4. 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%)

5. 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 other health-related records in the collection had access restrictions

8. Variables

9. What are the “Most Useful” formats for archivists to identify? 1.Patient histories (91.67%) 2.Case files 3.Correspondence 4.Patient questionnaires 5.Patient summaries 6.Consultation files 7.Family medical histories 8.Admission/registration record 9.Diagnostic indices 10.Photographs/medical imaging 11.Informed consent records (43.75%) 12. Autopsy records (40.43%) 13.Lab notebooks 14.Prescription books/logs 15.Research protocols 16.Hospital policies 17. Graphs and charts 18. Surgical logbooks 19. Microscope slides/specimens 20. Billing information 21. Genetic testing records 22. Immunization records 23. Insurance records (12.5%)

12. Thank you! (And how can we help?)