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
Data Entry
Review
Advice
Education
Comments
Help
Logout
Vital Signs Blood Sugar
Data Entry
patcis.cgi
Web ServerWeb Browser
SessionRegistry
UsageLog
Internet
2
3
6
PatCIS Architecture
1
CGI
4
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
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
0
2
4
6
8
10
12
14
16
18 User 1
User 2
User 3
User 4
User 5
User 6
User 7
User 8
User 9
User 10
User 11
User 12
User 13
Log-Ons Failures by User
Active Log-Ons by User
0
5
10
15
20
25
30
35
40
45
50User 1
User 2
User 3
User 4
User 5
User 6
User 7
User 8
User 9
User 10
User 11
User 12
User 13
Average Monthly Log-Ons
0
2
4
6
8
10
12
14
16
U1 U2 U3 U4 U5 U6 U7 U8 U9 U10 U11 U12 U13
0
10
20
30
40
50
60
70User 1
User 2
User 3
User 4
User 5
User 6
User 7
User 8
User 9
User 10
User 11
User 12
User 13
Average Session Time by User
0
50
100
150
200
250User 1
User 2
User 3
User 4
User 5
User 6
User 7
User 8
User 9
User 10
User 11
User 12
User 13
Minutes per Month
Function Usage – Data Review
81
30
1518
35
3536
Laboratory Radiology Vital Signs Diabetes Pathology Microbiology
1831 Total
Function Usage – All
183183
106
73
17
1013
53
2
Data Review Infobutons Data Entry Education Disclaimer
Help e-mail Newsgroups Advice Comments
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
Experience since 10/00
0
5
10
15
20
25
30
35
40
45
50
User 1
User 2
User 3
User 4
User 5
User 6
User 7
User 8
User 9
User 10
User 11
User 12
User 13
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
