Patients

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Patients Access to Medical RecordsExperience
with PatCIS

• James J. Cimino
• Division of General Internal Medicine
• Department of Medical Informatics

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Overview

• Motivation
• Architecture
• Functionality
• Recruitment
• Evaluation Techniques
• Results
• Discussion

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Motivation

• Understanding on-line health information
• Access to personal health records
• Regulatory requirements are coming
• Commercial sites give patients access to their
  data
• What will happen to the patient?
• What will happen to the patient-provider
  relationship?

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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

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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
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Functionality

• Sign on
• Data entry
• Data review
• Education
• Advice
• Infobuttons
• Customization

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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

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Evaluation Issues

• Theories and methods from
• cognitive and social sciences
• usability engineering
• studies of human-computer interaction
• Complexity and diversity of users leads to need
  for multi-method approach to evaluation
• formative - feedback into design
• summative - evaluate final product

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Evaluation Challenges

• Varied users who interact from various locations
• Less able to conduct controlled studies
• Current state-of-the-art
• track user actions (e.g. clicks) - tells what
  they do, but not why
• on-line questionnaires/feedback forms - often not
  filled in, limited questions
• interviews - users often do not know what they do

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Evaluation of Patient Systems

• What type of information do patients want?
• What is the effect on doctor-patient interaction?
• How does system affect patient understanding and
  communication with their providers?
• understanding their own condition
• decision making and management of their condition
• How to collect useful data from limited number of
  subjects?

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Patient Variability

• Differences in prior knowledge
• Health differences
• Cognitive differences
• Cultural diversity
• Motivational differences
• Varied educational background

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PatCIS Evaluation Questions

• What features of PatCIS are most used by
  patients?
• What features are least used and why?
• Are there usability issues that need to be
  resolved?
• How does use of PatCIS affect the doctor-patient
  interaction?
• Can patients comprehend information presented by
  PatCIS?
• Does use of PatCIS affect decision making and
  disease management?

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Televaluation of PatCIS
4. Tracking User Actions - System Usage
Database (log files)
1. Video Based Usability Testing - in
laboratory
Interact via WWW
Patient Information System (PatCIS)
Patient
3. E-mail (to evaluators)
2. Telephone Interviews (audiotape)
5. On-line Questionnaire Data
(sequenced forms)
(Kushniruk, Patel, Patel, Cimino, 2001)
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Log File Analysis

• sandcar!Fri Oct 27 113222 2000!cim.cpmc.columbia
  .edu!patcislogin
• sandcar!Fri Oct 27 113224 2000!cim.cpmc.columbia
  .edu!patcisData Review
• sandcar!Fri Oct 27 113228 2000!cim.cpmc.columbia
  .edu!patcisData ReviewLaboratory
  Detaillab_detail.cgi
• sandcar!Fri Oct 27 113230 2000!cim.cpmc.columbia
  .edu!patcisData ReviewLaboratory
  DetaillabSum.cgi
• sandcar!Fri Oct 27 113235 2000!cim.cpmc.columbia
  .edu!patcislogout

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Results

• Functions
• Enrollment
• System usage
• Function usage
• Adverse events

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Enrollment

• Mailing to gt200 physicians
• 13 physicians returned signed consent forms
• 19 subjects suggested
• 13 enrolled
• 12 used the system over 19 months
• 1 non-CPMC subject enrolled

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Baseline Questionnaire data

• Initial patient expectations
• will keep me informed of latest developments
• will enable me to better understand treatment
• possible information my doctor may forget
• timely availability of test results
• Prior subject education
• Majority of subjects (90 ) had some
  post-secondary education
• Conditions patients were interested included
  cholesterol management, diabetes and chronic
  conditions
• All were prior computer users

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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

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Log-Ons Failures by User
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Active Log-Ons by User
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Average Monthly Log-Ons
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Average Session Time by User
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Minutes per Month
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Function Usage I

• Data review 1831 total
• 1518 laboratory
• 737 Laboratory button ? 1083 specific reports
• 186 Laboratory Details button
• 249 summaries
• 36 vital signs
• 35 diabetes flow sheets
• 212 reports (81 radiology, 35 pathology)
• 30 Microbiology

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Function Usage I
I

• Data review 1831 total

• Data entry 73 total
• 34 vital signs
• 39 diabetes flow sheets
• Education 53 total
• Advice 6 total
• 5 cholesterol guideline
• 1 mammography guideline
• Other
• 10 newsgroups
• 83 infobuttons
• 2 comments
• 10 e-mail to physician
• 17 disclaimers
• 13 help

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Adverse Events

• None reported

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Interviews

• Conducted (via telephone) summer/fall 2000
• Both patients and their physicians interviewed
• Audio recorded, transcribed and qualitatively
  analyzed
• Examples of interview probes (for patient
  interviews)
• General usage
• What do you use PatCIS for, why?
• What features have you found most (least)
  useful?
• Usability
• Have you had any problems using PatCIS?
• Effects on health care interaction and decision
  making
• Do you feel PatCIS has changed the way you view
  health or illness?
• Has use of PatCIS changed in any way your
  interaction with your health care providers?
  Explain

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Analyses of Interviews with Patients and
Physicians

• Subjects felt that use of PatCIS had a direct
  impact on doctor-patient communication
• For patients
• Improved communication with physician resulting
  from reviewing their own lab results prior to
  meeting with their physician 85
• For physicians
• Allows for focus on issues of decision making and
  patient compliance during during doctor-patient
  interviews (rather than review of data) 100
• Decreased workload in reviewing essential data

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Excerpts from Patient Interviews

• Communication is less in the way of getting
  information now, and more in the way of
  discussing treatment options and agreeing on a
  course of action, so to me its more efficient
  than the old way
• I look for trends in my medical data and if I
  see something I can contact the doctor to see
  whats going on, what we can do, change meds or
  whatever

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Excerpts from Physician Interviews

• Right now most of the communication takes
  place during the ten or fifteen minute visit and
  if I throw a lot of information at the patient
  about their condition or what I want them to do,
  its very hard for them to absorb all that.
• It (PatCIS) gives them a chance to go back and
  look at things about their health record that
  they can then ask better questions about in the
  limited time that we have during the visit. Its
  another channel of communication

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Additional Findings

• Low usage of certain functions (e.g. advice,
  educational) may have been due to lack of user
  knowledge of full system capability
• Implications for providing further training
• Usability
• Occasional difficulties in viewing graphs
• Problems with linkages to outside resources
• Subjects did not have problems in learning how to
  use PatCIS for reviewing data
• No adverse effects of use of PatCIS were
  indicated by patients or physicians

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Summary

• PatCIS was found to be usable by patients studied
• Patients indicated they understood the
  information accessed
• Review of data (Lab and reports) was the most
  important application of PatCIS by patients
• Patients and physicians indicated that PatCIS had
  improved their level of communication
• Low usage of other functions may have resulted
  from limited patient knowledge of system
  capabilities

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Discussion

• Architecture supports integration, security and
  tracking
• Enrollment was disappointing
• Population was highly selected by MD, by self,
  by Web
• Two patterns monthly and daily
• Log-on difficulties overcome
• Laboratories are the most popular

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Next Directions

• Diabetes mellitus patients
• Data entry
• Coordination with clinicians
• Targeted educational materials

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Conclusion

• Enthusiasm is not universal
• Technical issues were not a problem for our
  patients
• Privacy is achievable
• Patient understanding of their records was good
• Other features were of less interest
• Patient-physician impact was positive
• better D-P communication
• education of both patient and doctor
• treatment negotiations with common understanding

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Conclusions (cont.)

• Our Analyses indicate that use of systems like
  PatCIS can serve to facilitate processes involved
  in improved health care delivery through shared
  workload between doctor and patient, resulting in
  better communication and negotiation
• Reducing physician workload patients better
  informed of day-to-day variations in their own
  condition
• Making patients more accountable for chronic
  diseases and management