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What do Patients Do with Access to Their Medical Records?

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. Consumer Health Information Issues. Understanding on-line health information Access to personal health records

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What do Patients Do with Access to Their Medical Records?

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  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

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

  5. 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

  6. 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

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

  8. 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

  9. 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

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

  11. Log-Ons Failures by User

  12. Active Log-Ons by User

  13. Average Monthly Log-Ons

  14. Average Session Time by User

  15. Minutes per Month

  16. Function Usage – Data Review 1831 Total

  17. Function Usage – All 2098 Total

  18. Adverse Events • None reported

  19. 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

  20. 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

  21. Experience since 10/00

  22. 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

  23. 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

  24. 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

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