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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 • 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?
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
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
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
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
Results • Functions • Enrollment • System usage • Function usage • User experience • Clinician experience • Adverse events • Experience since 10/00
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
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
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
Function Usage – Data Review 1831 Total
Function Usage – All 2098 Total
Adverse Events • None reported
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
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
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
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
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