1. What do Patients Do with Access to Their Medical Records? James J. Cimino, Vimla L. Patel, Andre W. Kushniruk Columbia University, McGill University, York University

2. Consumer Health Information Issues Understanding on-line health information Access to personal health records Regulatory requirements are coming Commercial sites for giving patients access to their data What will happen to the patient? What will happen to the patient-provider relationship?

3. The Patient Clinical Information System (PatCIS) New York Presbyterian Hospital clinical data repository Web-based Clinical Information System (WebCIS) National Information Infrastructure contract from NLM: –give patients WebCIS –see what happens Pilot study conducted

7. Data Entry Review Advice Education Comments Help Logout Vital SignsBlood Sugar Data Entry patcis.cgi Web Server Web Browser Session Registry Usage Log Internet 2 3 6 PatCIS Architecture 1 CGI 4 5

8. PatCIS Recruitment Mail physician consent forms to physicians Wait for physicians to suggest subjects Mail URL for consent form to subjects On-line enrollment Patient prints, signs and mails consent form Physician provides function-specific consent Mail user name, password and SecurID card to patients

9. Log File Analysis sandcar!Fri Oct 27 11:32:22 2000!cim.cpmc.columbia.edu! |patcis^login sandcar!Fri Oct 27 11:32:24 2000!cim.cpmc.columbia.edu! |patcis^Data Review sandcar!Fri Oct 27 11:32:28 2000!cim.cpmc.columbia.edu! |patcis^Data Review^Laboratory Detail^lab_detail.cgi sandcar!Fri Oct 27 11:32:30 2000!cim.cpmc.columbia.edu! |patcis^Data Review^Laboratory Detail^labSum.cgi sandcar!Fri Oct 27 11:32:35 2000!cim.cpmc.columbia.edu! |patcis^logout

10. Results Functions Enrollment System usage Function usage User experience Clinician experience Adverse events Experience since 10/00

11. Functions Data entry: vital signs, diabetic flow sheet Data review: vital signs, diabetic flow sheet, laboratory, radiology, pathology, cardiology, discharge summaries, microbiology Education: geriatrics, diabetes, Home Medical Guide, advanced directives Advice: cholesterol, mammograms Infobuttons: body-mass index, laboratory, microbiology organisms, microbiology sensitivities, Pap smear

12. Enrollment Mailing to >200 physicians 13 physicians returned signed consent forms 19 subjects suggested 13 enrolled 12 used the system over 19 months 1 non-CPMC subject enrolled

13. System Usage 131log-on failures 22wrong user name 51wrong password 58wrong Secure ID 33log-ons without any activity 466active sessions (261 logged out) ----- 630log-ons

14. Log-Ons Failures by User

15. Active Log-Ons by User

16. Average Monthly Log-Ons

17. Average Session Time by User

18. Minutes per Month

19. Function Usage – Data Review 1831 Total

20. Function Usage – All 2098 Total

21. Adverse Events None reported

22. User Experience In study > 9 months:8 Responded:5 Used system:4 Useful:3/4 Usable for data entry:4/4 Usable for review:4/4 Improved MD interactions:4/4 Improved understanding:3/4 Changed healthcare:3/4

23. Clinician Experience Participating physicians:3 Aware their patients were using PatCIS:3/3 Helping patients understand illness:3/3 Patients gaining control of their care:3/3

24. Experience since 10/00

25. Discussion Architecture supports integration, security and tracking Enrollment was disappointing Population was highly selected: by MD, by self, by Web Usability: –majority used it successfully –log-on difficulties overcome –three patterns: initial, monthly, daily –laboratories are the most popular Understandability: –educational resources and infobuttons not utilised Patient/clinician relations: –improved relationships –made interactions more efficient and effective

26. Conclusion Secure, usable Web-based access by patients possible Patients find it usable and useful Patient/clinician relations are improved Enthusiasm is not universal Extension to other demographic groups untested

27. Acknowledgments National Library of Medicine Paul Clayton for inspiration Andrew Brooks for perspiration Developers: Gaurav Aggarwal, Shabina Ahmad, Osama Alswailem, David Baorto, Mehmet Birgen, Ying Chen, Jen-Hsiang Chuang, Joseph Finkelstein, Richard Gallagher, Xiaoli Huang, Cui Lei, Eneida Menonça, and Soumitra Sengupta Physicians, especially Jai Radhakrishnan Patients, especially Seymor Kaplan