Design and Development of a Personal Health Record System for Prostate Cancer Patients by

148 Pages·2013·1.42 MB·English

by  Avesta Razavi

Design and Development of a Personal Health Record System for Prostate Cancer
Patients

by

Avesta Razavi
MD, Tehran University of Medical Sciences, 1995

A Thesis Submitted in Partial Fulfillment
of the Requirements for the Degree of

MASTER OF SCIENCE

in the School of Health Information Science

 Avesta Razavi, 2013
University of Victoria

All rights reserved. This thesis may not be reproduced in whole or in part, by photocopy
or other means, without the permission of the author.
ii
Supervisory Committee

Design and Development of a Personal Health Record System for Prostate Cancer
Patients

by

Avesta Razavi

MD, Tehran University of Medical Sciences, 1995

Supervisory Committee

Dr. Andre Kushniruk, School of Health Information Science
Supervisor

Dr. Elizabeth Borycki, School of Health Information Science
Departmental Member
iii
Abstract
Supervisory Committee
Dr. Andre Kushniruk, School of Health Information Science
Supervisor

Dr. Elizabeth Borycki, School of Health Information Science
Departmental Member

There is a growing demand to involve patients in their own healthcare. Personal Health
Records are among the most promising tools for this purpose. However, these tools need
to meet patients’ needs and interests in order to be fully adopted and successfully used.
This study takes a user centered design approach to design and develop a personal health
record for prostate cancer patients by involving them in two main activities of a user
centered design: requirements gathering and evaluation. The first phase of the study uses
content analysis to analyze interviews with patients and elicit their needs and concerns.
Results of this phase showed that patient’s information needs are different depending on
the stage of the disease. Before starting treatment, patients are more interested in
information about different methods of treatment and their potential side effects.
However, after treatment, patients mostly need information about the management of
treatment complications and the long term follow ups of their disease. Results also
showed that the Internet is the most common information source for patients to find
information. However, patients expressed concerns regarding the credibility and
reliability of information they found on the Internet. The majority of patients also showed
interest in accessing their medical records. However, some patients were concerned about
the understandability of the information. Also, there was some concern regarding
electronic access to medical records and security of personal data. The findings from
iv
phase one are used in phase two to modify a preliminary prototype of the system. In
phase three, the modified prototype is evaluated by undergoing usability testing. Overall,
the results of usability testing showed that the system was generally useful and easy to
use. However, a number of issues were identified that could be resolved in the next
iteration of its design and development.
v
Table of Contents
Supervisory Committee ...................................................................................................... ii
Abstract .............................................................................................................................. iii
Table of Contents ................................................................................................................ v
List of Tables .................................................................................................................... vii
List of Figures .................................................................................................................. viii
Acknowledgments.............................................................................................................. ix
Dedication ........................................................................................................................... x
CHAPTER 1: Introduction ............................................................................................. 1
CHAPTER 2: Review of the Literature ......................................................................... 4
2.1 What Are PHRs? ............................................................................................................ 4
2.2 Types of PHRs ................................................................................................................ 7
2.3 PHRs Potential Functionalities ..................................................................................... 12
2.4 Benefits of PHRs .......................................................................................................... 15
2.5 Barriers to Adoption and Use of PHRs ........................................................................ 17
2.6 PHRs and Chronic Diseases ......................................................................................... 21
2.7 Prostate Cancer ............................................................................................................. 22
2.8 Involving Patients in PHR Design and Development................................................... 24
CHAPTER 3: Study Purpose and Research Questions ................................................ 26
CHAPTER 4: Conceptual Framework ......................................................................... 28
4.1 User-centered Design ................................................................................................... 28
CHAPTER 5: Methods................................................................................................. 31
5.1 Participants ................................................................................................................... 31
vi
5.2 Materials and Setting .................................................................................................... 33
5.3 Procedure ...................................................................................................................... 37
5.4 Data Analysis................................................................................................................ 39
CHAPTER 6: Study Findings ...................................................................................... 43
6.1 Phase 1: Interviews ....................................................................................................... 43
6.2 Phase 2: Modifying the Prototype ................................................................................ 88
6.3 Phase 3: Usability Testing ............................................................................................ 96
CHAPTER 7: Discussion & Conclusion .................................................................... 102
7.1 Highlights of the Findings .......................................................................................... 102
7.2 How Research Questions Were Answered ................................................................. 105
7.3 Implications for Designing E-Health Applications for Prostate Cancer Patients ....... 109
7.4 Implications for System Design in Consumer E-Health Applications ....................... 111
7.5 Implications for Future Research ............................................................................... 112
7.6 Study Limitations ....................................................................................................... 113
7.7 Conclusion .................................................................................................................. 113
References ....................................................................................................................... 115
Appendix ......................................................................................................................... 122
Appendix 1: Computer, Internet, Cell phone survey ............................................................... 122
Appendix 2: Demographic Survey .......................................................................................... 124
Appendix 3: Interview Guide .................................................................................................. 126
Appendix 4: Usability testing tasks (Phase 3) ......................................................................... 131
Appendix 5: Post Usability Testing Interview (Phase 3) ......................................................... 132
Appendix 6: Informed Consent (Phase 1) ............................................................................... 133
Appendix 7: Informed Consent (Phase 3) ............................................................................... 136
vii
List of Tables
Table 6 .1: Demographic characteristics of participants .................................................... 44
Table 6 .2: Computer and Internet use among participants ............................................... 45
Table 6 .3: Cell phone use of participants .......................................................................... 47
Table 6 .4: Frequency of treatment methods ..................................................................... 47
Table 6 .5: Pre-determined categories ............................................................................... 49
Table 6 .6: Factors influencing decision making ............................................................... 55
Table 6 .7: Overall frequency of topics mentioned as information needs ......................... 60
Table 6 .8: Frequency of mentioned topics by patient category and phase of disease ...... 61
Table 6 .9: Sources of Information .................................................................................... 63
Table 6 .10: Emergent Themes .......................................................................................... 81
Table 6 .11: Frequency of usability issues ....................................................................... 101
viii
List of Figures
Figure 4 .1: User-centered Design Activities (From ISO 13407) ...................................... 29
Figure 5 .1: Screen shot of the homepage of the PHR first prototype showing
alerts/reminders, care plan at a glance, and news boxes ................................................... 35
Figure 5 .2: Screen shot of the PHR first prototype showing PSA monitoring tool .......... 36
Figure 6 .1: Articles section in the first version of prototype ............................................ 89
Figure 6 .2: Presenting articles on the homepage of modified prototype .......................... 90
Figure 6 .3: Presenting articles on the articles page of modified prototype ...................... 91
Figure 6 .4: Patient Connect home page ............................................................................ 94
Figure 6 .5: Patient Connect topic page ............................................................................. 95
ix
Acknowledgments
First, I would like to express my sincere gratitude to my supervisor, Dr. Andre
Kushniruk, for his continuous support, encouragement, and immense knowledge. His
guidance helped me in all the time of my study and writing of this thesis. I could not have
imagined having a better advisor and mentor for my study.

I would also like to thank Dr. Elizabeth Borycki, my committee member for her valuable
insight and guidance and, especially her support.

I am sincerely grateful to Dr. Howard Pai for his valued insight and continuous support.
Dr. Pai’s help and support throughout the study made it possible for me to do the study.

I would like to acknowledge the financial, academic and technical support of The
Prostate Centre, Victoria and its staff. My special thanks go to Leanne Kopp, former
executive director of The Prostate Centre for all her support. I would also thank Heather
Gardiner, current executive director of The Prostate Centre for continuing the support
from the centre. I would also like to thank Teresa Cederberg for her valuable help in
recruiting participants.

Last but by no means least, I would like to thank my wife, Rosita, for all her support and
great patience at all times. Without her support and understanding, I could not have
completed this thesis.
x
Dedication
I lovingly dedicate this thesis to
my wife, Rosita,
who supported me each step of the way.
Thank you for all your understanding and patience.