Patient-Centered Visualization for Personal Health Records

224 Pages·2016·2.78 MB·English

UCLA
UCLA Electronic Theses and Dissertations
Title
Patient-Centered Visualization for Personal Health Records
Permalink
https://escholarship.org/uc/item/36581343
Author
Zide, Mary
Publication Date
2016

Peer reviewed|Thesis/dissertation
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University of California
UNIVERSITY OF CALIFORNIA
Los Angeles

Patient-Centered Visualization for
Personal Health Records

A dissertation submitted in partial satisfaction of the requirements
for the degree Doctor of Philosophy in Biomedical Engineering

by
Mary Catherine Zide
2016
ABSTRACT OF THE DISSERTATION

Patient-Centered Visualization for
Personal Health Records

by

Mary Catherine Zide
Doctor of Philosophy in Biomedical Engineering
University of California, Los Angeles, 2016
Professor Alex Anh-Tuan Bui, Co-Chair
Professor Corey Wells Arnold, Co-Chair

Shifts in the consumer health landscape including the active participation of consumers within
their care, the myriad of health information sources available to them, and the emphasis on
preventive care, require patients to have improved information access and health literacy skills.
Designers of eHealth tools must consider how best to meet the information needs of patients
given that prior research has indicated that needs vary, making it unlikely that there is a
homogeneous approach that will meet all needs. In spite of this, iterative design and inclusion of
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consumer feedback in the design process remain underutilized. This dissertation addressed this
gap by creating a protocol for the design of a patient-centered information visualization for a
specific population of interest, implemented here with lung cancer screening patients. Building
upon past efforts in eHealth design and usability testing, the design centered on a method to
produce a conceptual information model, which consisted of a five-step process that documented
patient information needs and identified content and methods to address those needs. The model
integrated information from various health education sources and provided dynamic personalized
displays of the educational information alongside an individual’s radiology report. For this work,
this model was displayed via a patient portal visualization, and evaluated by patients to
determine whether patients reported the visualization as usable and whether using the
visualization improved health literacy. These results were compared to a survey of general health
consumers’ information preferences and health literacy. Initial results confirm that health literacy
and information preferences varied by demographics (including education and the number of
times prior an individual had used a patient portal) and suggest that patients find the integration
of educational information alongside their reports, in contrast to the reports alone, as easier to
use. The results of this study can be used as guidelines to further additional design of eHealth
tools.

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This dissertation of Mary Catherine Zide is approved.

Ricky Kiyotaka Taira

Gregory H. Leazer

Denise R. Aberle

Corey Wells Arnold, Committee Co-Chair

Alex Anh-Tuan Bui, Committee Co-Chair

University of California, Los Angeles
2016

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Table of Contents
CHAPTER 1 Introduction............................................................................................................... 1
1. Overview ..................................................................................................................................... 1
1.1. Background and Motivations ............................................................................................... 2
1.2 Aims of the Dissertation ........................................................................................................ 3
1.3 Summary of Contributions .................................................................................................... 4
1.4 Organization of the Dissertation ........................................................................................... 5
CHAPTER 2 Background and Motivation ..................................................................................... 6
2.1 The Need for Patient Portals ................................................................................................. 6
2.1.1 Patient Information Needs and Preferences .................................................................... 8
2.1.2 Practitioner Perspective ................................................................................................ 10
2.1.3 Content of a Portal ........................................................................................................ 11
2.1.4 Health Literacy ............................................................................................................. 12
2.2 A Review of Current Portals ............................................................................................... 14
2.2.1 General Health Portals .................................................................................................. 16
2.2.2 Disease-Specific Portals ............................................................................................... 16
2.2.3 Favorable Outcomes ..................................................................................................... 17
2.2.4 Provision of Additional Supporting Content ................................................................ 17
2.2.5 User Studies .................................................................................................................. 21
2.3 Technical Considerations and Implementations ................................................................. 26
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2.3.1 Information Standards .................................................................................................. 26
2.3.2 Open Challenges ........................................................................................................... 27
CHAPTER 3 Conceptual Information Model............................................................................... 30
3.1 Information Model for Lung Cancer Screening Overview ................................................. 30
3.1.1. Classes, Concepts, and Relations within the Conceptual Information Model ............. 32
3.1.2 Supporting Educational Content ................................................................................... 33
3.1.3 Simple Measure of Gobbledygook (SMOG) ................................................................ 34
3.1.4 Images with Definitions ................................................................................................ 35
3.1.5 Data Collection ............................................................................................................. 36
3.2 XML Schema of Conceptual Information Model ............................................................... 37
3.3 Annotation Ontology ........................................................................................................... 38
3.4 Conceptual Model Design Method ..................................................................................... 39
3.4.1 Literature Review ......................................................................................................... 40
3.4.2 Survey ........................................................................................................................... 42
3.4.3 Further Revisions .......................................................................................................... 44
3.5 Portal Application ............................................................................................................... 45
3.5.1 Homepage ..................................................................................................................... 45
3.5.2 Report Viewer............................................................................................................... 48
3.5.3 Linkage of Educational Information with the Portal .................................................... 49
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3.5.4 Library .......................................................................................................................... 50
CHAPTER 4. Usability Study ...................................................................................................... 51
4.1 Survey Composition ............................................................................................................ 51
4.1.1 Patient Portal Preference Questions ............................................................................. 51
4.1.2 Lung Cancer Knowledge and Lung Cancer Screening Knowledge Questions ............ 53
4.1.3. Demographic Questions .............................................................................................. 54
4.2 IRB Approval ...................................................................................................................... 54
4.3 Organization of Experiment ................................................................................................ 55
4.4 Recruitment ......................................................................................................................... 55
4.5 Step I ................................................................................................................................... 56
4.5.1 Typical Patient Profiles ................................................................................................ 57
4.5.2 Coding of Step I Results ............................................................................................... 57
4.6 Step II .................................................................................................................................. 57
4.7 Analysis Methods for Survey Results ................................................................................. 59
CHAPTER 5 Auxiliary Web Survey Design ................................................................................ 60
5.1 Difference in MTurk Survey to In-Clinic Survey ............................................................... 60
5.2 Methods ............................................................................................................................... 61
5.3 Analysis Methods for Survey Results ................................................................................. 61
CHAPTER 6 Results..................................................................................................................... 63
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6.1 Usability Study In-Clinic Results ........................................................................................ 63
6.1.1 Demographic Frequency Results .................................................................................. 63
6.1.2 Univariate Results......................................................................................................... 65
6.1.3 Univariate Analysis for Step II ..................................................................................... 68
6.1.4 Logistic Regression Analysis for Significant Univariate Results ................................ 71
6.1.5 Wilcoxon Signed-Rank Test Paired Observations for Step I and Step II Portal .......... 72
6.1.6 McNemar Paired Observations for Step I and Step II Portal ....................................... 74
6.1.7 Wilcoxon Signed-Rank Test Paired Observations for Step II Portal and Step II Paper75
6.1.8 McNemar Paired Observations for Step II Portal and Step II Paper ............................ 77
6.1.9 Free Text Analysis ........................................................................................................ 77
6.1.10 Expansion of Ontology ............................................................................................... 78
6.2 Online Survey Results ......................................................................................................... 79
6.2.1 Demographics ............................................................................................................... 79
6.2.2 Univariate Analysis Patient Portal Questions ............................................................... 81
6.2.3 Univariate Analysis Lung Cancer Screening Knowledge Questions ........................... 82
6.2.4 Logistic Regression Analysis for Significant Univariate Results ................................ 83
6.3 Comparison of In-Clinic and MTurk Results ...................................................................... 84
CHAPTER 7 Discussion ............................................................................................................... 86
7.1 Demographics within In-Clinic Cohort ............................................................................... 86
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