306 WINKELMAN ET AL.

, Patient-Perceived Usefulness of Online EMR

Research Paper j

Patient-Perceived Usefulness of Online Electronic Medical

Records: Employing Grounded Theory in the Development of
Information and Communication Technologies for Use by
Patients Living with Chronic Illness

WARREN J. WINKELMAN, MD, MBA, FRCPC, KEVIN J. LEONARD, MBA, PHD,

PETER G. ROSSOS, MD, FRCPC

Abstract Objective: Patient use of online electronic medical records (EMR) holds the potential to improve
health outcomes. The purpose of this study is to discover how patients living with chronic inflammatory bowel disease
(IBD) value Internet-based patient access to electronic patient records.
Design: This was a qualitative, exploratory, descriptive study using in-depth interviews and focus groups of a total of 12
patients with IBD of at least one-year duration at University Health Network, a tertiary care center in Toronto, Ontario.
Results: Four themes have been elucidated that comprise a theoretical framework of patient-perceived information and
communication technology usefulness: promotion of a sense of illness ownership, of patient-driven communication, of
personalized support, and of mutual trust.
Conclusions: For patients with chronic IBD, simply providing access to electronic medical records has little usefulness
on its own. Useful technology for patients with IBD is multifaceted, self-care promoting, and integrated into the
patient’s already existing health and psychosocial support infrastructure. The four identified themes can serve as focal
points for the evaluation of information technology designed for patient use, thus providing a patient-centered
framework for developers seeking to adapt existing EMR systems to patient access and use for the purposes of
improving health care quality and health outcomes. Further studies in other populations are needed to enhance
generalizability of the emergent theory.
j J Am Med Inform Assoc. 2005;12:306–314. DOI 10.1197/jamia.M1712.

Electronic forms of information and communication can pro-
mote the emergence of patients as strategic partners in health
care.1 Active use by patients of electronic mail, personal
Affiliations of the authors: Departments of Health Policy, Manage-
ment, and Evaluation (WJW, KJL) and Medicine (PGR), University of
Toronto Faculty of Medicine and the Centre for Global e-Health
Innovation, University Health Network (WJW, KJL, PGR), Toronto,
Ontario, Canada.
Preliminary results of this study were presented as a poster at the
e-Health Conference in Victoria, British Columbia, May 2004.
Supported by the Canadian Institutes for Health Research Health
Informatics PhD Strategic Training Program and the School of
Graduate Studies of University of Toronto (WJW).
The authors thank the following researchers at the Centre for Global
e-Health Innovation for their contributions to this research: Anjum
Chagpar (prototype development and design, focus group facilita-
tion), Colleen Reilly (questionnaire design, data collection, and
preliminary data analysis), Jennifer Wong, Galina Privara, and Joanne
Hohenadel (data collection).
Correspondence and reprints: Warren J. Winkelman, MD, MBA,
Centre for Global e-Health Innovation, University Health Network,
R. Fraser Elliott Building, 4th Floor, 190 Elizabeth Street, Toronto,
Ontario, Canada M5G 2C4; e-mail: <w.winkelman@utoronto.ca>.
Received for publication: 10/04/04; accepted for publication:
12/30/04.
health records, and the Internet, especially integrated within
the context of an effective physician-patient relationship,
holds the potential to improve both individual and organiza-
tional health outcomes.2 Integrated, comprehensive, two-way
information and communication technology (ICT) are envis-
aged as part of the future of patient-physician interaction.3
There are numerous barriers facing the implementation and
integration of patient-use ICT. In the case of patient-accessible
electronic medical records (EMR), at the level of health care
organizations, insurers, and health systems, many of these
barriers are political, fiscal, and cultural.4 At the physician
level, concerns about patient misunderstanding of physician
notations as well as concerns over a loss of control over pa-
tient interactions and increasing workload complicate the ac-
ceptance of these technologies.5,6 At the patient level, barriers
include the individual’s state of general health, uncertainty,
perceived social support, age, education, income, race, gen-
eral literacy, functional health literacy, learning styles, psy-
chological profile (e.g., health locus of control), perceived
self-efficacy, access to computers and the Internet, perceived
cost, and perceived difficulties of health provider access,6 as
well as fear (of death, incapacity, or cancer), guilt, and con-
cepts of disease as retribution or punishment.7
Yet patients are broadly and successfully implementing infor-
mation technology in self-care and self-management despite
these concerns, as evidenced most notably by exponential
Journal of the American Medical Informatics Association Volume 12
growth in the use of the Internet by the general populace for
health information seeking. This apparent paradox exists be-
cause patients assess both the value of the Internet and their
capacity to use the Internet from their own frames of reference
and are motivated to use the Internet to meet their perceived
needs. In other words, patient acceptance and use of the
Internet for health information seeking is realizable be-
cause patients perceive that there is a seemingly good fit be-
tween the Internet and their perceived needs, wants, and
capabilities.8
Conversely, a lack of a definitive characterization of the pa-
tient’s point of view may be responsible in part for the uneven
record of patient-directed ICT such as access to EMR9 and
online peer-to-peer communities10 to demonstrate consistent,
measurable impacts on health outcomes. Therefore, the onus
is on the health informatics research community to develop
sound theoretical models for the design and evaluation of
patient-use ICT that take into consideration the unique chal-
lenges of being a patient.
Background and Rationale
More than 40% of patients have at least one chronic illness, ac-
counting for nearly two thirds of all medical expenditures.11
Because of their long time frame and high attendant costs
over time, chronic illnesses lend themselves to electronically
mediated self-management tools.12 Prototypes of Web-based,
patient-centered ICT have been demonstrated to support self-
management of illness and enhance understanding of the
complications of poorly controlled disease.13,14 Patients living
with chronic illness are also more likely to use health informa-
tion than their healthier counterparts,15 although each chronic
illness has specific, recognizable challenges for affected pa-
tients in symptom comprehension, information management,
task fulfillment, and social interaction.16
A descriptive, exploratory research approach such as
grounded theory is well suited to uncover the nature of
chronically ill patients’ perceptions of reality, how these per-
ceptions create meaning with regards to the specific phenom-
enon of access to medical records, and how the patients’
subjective meaning about this phenomenon contributes to
their eventual acceptance and use of EMR.17 Iterative inter-
play between data collection and analysis allows for the
‘‘emergence’’ of concepts directly from the language and per-
spectives of the actual chronically ill patients.17 Subsequent
integration of these concepts with the researchers’ interpreta-
tion of the literature results in a theoretical framework that is
‘‘grounded’’ in the realities of chronically ill patients. This
‘‘grounded theory’’ should then form the basis for the de-
velopment of systems and evaluation tools that capture this
subjective reality of potential patient-users. In contrast,
development that is guided solely by information system de-
signers’ and clinicians’ beliefs about patient-users may result
in ICT that do not fit with the actual challenges and infor-
mational needs of patients living with chronic illness in the
community.7
Methods
Research Setting
The setting for this research was the ‘‘iChart’’ project
at University Health Network (UHN) in Toronto, Ontario,
Number 3 May / Jun 2005 307
a collaborative research initiative that partnered patients,
clinicians, and technical specialists in the design and develop-
ment of patient access to online EMR. The original intent was
to study a group of patients affected by one chronic illness.
Although many patient groups were initially considered,
a strategic decision was made early on in the study to focus
on inflammatory bowel disease (IBD) patients. Des-
pite concerns over limits to the generalizability of eventual
results, this proved to be the most fruitful choice because of
ease of access for the research team to this particular patient
population.
Inflammatory bowel disease is a prototypical chronic illness:
complex origin and insidious onset followed by a trajectory of
long duration with unpredictable exacerbations and remis-
sions, psychosocial etiologies and ramifications, incurable or
nonspontaneously resolving with the potential for long-
term functional or physical disability, with numerous strate-
gies for direct and indirect treatment, and in which patients
are active agents in management.18 Inflammatory bowel dis-
ease patients also tend to be of younger age groups, more
technologically aware, and highly interested in self-manage-
ment of their disease.19 The specific psychosocial (e.g., body
image, loss of control, feeling dirty, isolated, fearful, lack of
medical community information and support) and physical
(e.g., bowel symptoms, energy loss) concerns of IBD strongly
affect patients’ health perceptions and interpersonal relation-
ships.20–22 Psychosocial stresses arising during daily living
are an important etiologic factor in IBD exacerbations.23 The
potential for discordance between patient and physician per-
ceptions of IBD erodes communication, treatment adherence,
and health outcomes.24–26
What is already known about the perspective of the patient
with IBD on the use of information in illness self-management
appears contradictory. Generally, patients subjectively and
objectively need more information than they already receive
from their physicians and other resources.27–30 While there
is high interest in online information, self-reported use of
the Internet for information and support is low.31 Para-
doxically, more information may cause either no impact on or
worsening of health-related quality of life and psychosocial
adjustment.32–34
Sampling Procedure
The study used a systematic, nonprobabilistic sampling pro-
cedure.35 Informants were chosen if it was thought they were
likely to possess experiential knowledge of living with
chronic illness and personal medical information: Subjects
were required to have lived with a long-term incurable illness
for at least one year. There were no restrictions on age and
gender, nor was computer, technology, or Internet experience
a requirement for entry. Subjects were told that the interview
was part of a hospital-based initiative to develop access to pa-
tient records over the Internet, but previous experience with
medical records was not specified as a criterion for study en-
try. Subjects were reimbursed solely for personal expenses re-
lated to attending the interview.
The initial focus on patients with IBD was considered ‘‘con-
venience based’’ because one of the researchers (PGR), a prac-
ticing gastroenterologist, facilitated access to a subject
population. However, remaining with patients with IBD
was a purposeful sampling decision because, as described
308 WINKELMAN ET AL., Patient-Perceived Usefulness of Online EMR

above, IBD fit the characteristics of a prototypical chronic with more recent transcripts and the literature, termed the
illness.17 ‘‘constant comparison method,’’ was employed throughout
Subsequently, our sampling strategy evolved into a theoreti- the study. Data analysis took place both simultaneously
cally driven sampling process: After the initial focus groups, with and immediately following data collection (interviews
sampling selection identified patients with IBD with a variety and focus groups). As concepts and apparent gaps emerged,
of personal attributes that could either substantiate or negate methods for sampling and data collection evolved to address
previously observed findings,35 including experience with in- those gaps.37,38
formation systems, other comorbidities, health care–related The researchers employed a three-stage analysis of the
work experience, self-professed biases against the Internet transcript data.39 In the first stage, termed ‘‘open’’ or ‘‘sub-
and computers in self-care, and technological ‘‘illiteracy.’’ In stantive’’ coding, transcripts were deconstructed into
total, 12 patients with chronic IBD of at least one-year dura- component key words and phrases. These codes were then
tion were interviewed either in focus groups or individually grouped into a loose framework of ideas, a procedure known
in depth (Table 1). as ‘‘axial’’ coding. These ideas were then grouped into a more
structured framework of higher level themes, a procedure
Data Collection Procedure known as ‘‘selective’’ coding.17 Each subsequent transcript
The UHN Research Ethics Board approved the study. A set of was deconstructed in a similar manner, but the higher level
open-ended questions about information, medical records, codes evolved to reflect the integration of newer ideas emerg-
and EMR access and use (Table 2) was employed in in-depth ing from the transcripts into the overall coding structure.
interviews and focus groups limited in duration to 90 min-
utes. One facilitator assisted by one note taker conducted Table 1 j Participant Demographics (N = 12)
each session. Each session was recorded and transcribed ver-
Gender
batim. The qualitative research software N-Vivo (Version 4, Male 5
QSR) was used to manage data and to provide a structure Female 7
for analysis.36 Age range (yr)
In addition, seven ‘‘mock pages’’ from an online medical 21–40 9
record were shown to participants during each session 41–60 3
Years Since Diagnosis
(Fig. 1). These were nonfunctioning to avoid bias related to
(Range; 1–23 yr)
a patient’s fascination with the particular technology. After
1–5 6
the first focus groups were completed, transcribed, and ana- 6–10 3
lyzed, some patient-generated ideas were integrated into .10 3
the mock Web pages to stimulate more in-depth discussion Diagnosis
during subsequent interviews. Crohn’s disease 11
Ulcerative colitis 1
Data Analysis Participation
A ‘‘responsive’’ approach to data collection and analysis in Focus group 8
Individual interview 4
which data extracted from earlier transcripts were compared

Table 2 j Interview and Focus Group Questions

Current health self-management
strategies
Attitude toward electronic health
information
Demonstration of Internet-based
EMR, and iChart prototype
EMR = electronic medical records.
Is there any aspect of your illness that you find challenging? What is the most difficult thing to deal
with? How do you cope with it? How do you currently overcome these challenges? Are you aware of
other things you could do to overcome the challenges? How does your illness affect what you can or
cannot do?
Do you have information resources that have helped you with your illness? Is it helpful? How? What
are the sources of this information? Where did you get it? Was it easy to obtain? Did you record the
information? Do you carry the information with you? Have you ever received information that was
not helpful? Did you receive any information at the time of your diagnosis?
Have you ever accessed your health record? Do you know whether you have access to your personal
health record? What sort of information do you think is contained in your health record? How
did/would you gain access? Do you think it would be easy to gain access? Do you think it
was/would be useful? Would you like to be able to add information to your record?
Have you ever used the Internet in relation to the management of your illness? If yes, how have you
used it? Have you ever sought information on drugs, treatments, alternative therapies? Have you
used communication tools such as chat rooms? How useful was the information to you? What did
you do with that information?
Do you think you would use an electronic health chart if it were available to you over the Internet? If
yes, how do you see yourself using it? If no, why not? What are your concerns?
If you had full control over the design of the perfect electronic health chart, what would it be like? What
would be on it and why? How would you use it and why? What issues are important to you that you
would like the developer to consider?
What are your thoughts? Did you think things are missing that should have been available? Did you
see things you would not have expected? Do you think you would you use any of these?
Journal of the American Medical Informatics Association Volume 12
F i g u r e 1. Sample mock Web page. (Courtesy of Anjum
Chagpar, UHN.)
While actively immersed in the data collection and analy-
sis, researchers frequently reflected on coding decisions.
Researcher ‘‘reflexivity’’ was important because it allowed re-
searchers to bracket their biases, knowledge, experience, and
personal feelings to minimize their influence on the analysis
process.40 For methodological rigor, it was important to create
an account of these reflections as they occurred. Memos, or
brief documents automatically generated and linked to lines
of text in the working transcript by the N-Vivo software,
were employed throughout the analysis to document not
only this researcher reflexivity, but also researcher thinking,
discussion, and decisions as well.41
Two subsequent individual in-depth interviews were sched-
uled to address possible inconsistencies and gaps in the early
codes and to confirm conceptual saturation.35 Conceptual sat-
uration refers to the end point in the qualitative data collec-
tion and analysis process, when further data collection and
analysis cease to generate any new or distinctive categories,
high level concepts, or substantive codes.42 As opposed to
quantitative analysis, in which an ideal sample size is calcu-
lated before data collection based on previous research and
literature review, final sample size in qualitative research is
driven by the prospective discovery of concepts, and hence
there is no specific number that represents an ‘‘ideal’’ sample
size.43 In our study, conceptual saturation appeared relatively
early, after ten subjects, and was subsequently confirmed by
comparing our preliminary conceptual structure with one
generated from the analysis of two transcripts by a second, in-
dependent researcher, revealing no new, distinctive higher
level concepts or categories.35
One of the key distinguishing features of the grounded theory
‘‘approach’’ is ‘‘theoretical coding,’’ the reinterpretation of the
final categories as composite hypotheses of an overall theory,
using a thorough literature review as an informant.17 The lit-
erature review identified the concept of ‘‘usefulness’’ as an
overarching theme that could reasonably link the four highest
level categories into a unified framework. Categories were
then renamed to bring them in line with language employed
in the literature.17
The study’s trustworthiness was assessed through an eval-
uation of three criteria: transferability, credibility, and de-
Number 3 May / Jun 2005 309
pendability.42 Transferability, the qualitative counterpart to
external validity, was intimately linked to the theoretical
sampling procedure. To construct trustworthy theory, it
was imperative to access the richest palette of subject
characteristics possible to ensure that the sample itself did
not limit the final conclusions. Therefore, transferability was
established through inclusion of patients with progressively
greater variation in individual characteristics, yet whose
voiced priorities and perceptions remained decidedly compa-
rable with naı̈ve, earlier subjects. Credibility, the qualitative
counterpart to internal validity, was established through tri-
angulation of data collection and analysis methods (inter-
views, focus groups, and literature review), independent
review of findings by the researchers, and member checking
(review of key findings and the researcher’s interpretations
with selected participants). Dependability, the qualitative
counterpart to quantitative reliability, was demonstrated
through similar findings or conclusions reached by another
independent researcher.
Results
Clinician researchers in e-health assert that useful Internet-
based solutions for chronic illness self-management facilitate
self-monitoring of clinical signs, provide ready access to ex-
planatory information, personalize content, and enhance
communication between patients and providers.44 However,
because this study’s focus is specifically on the patient’s voice
and the data are somewhat removed from physician-prede-
fined meanings of information technology usefulness, four
related but different themes emerge from the data that
encompass patient-perceived usefulness: illness ownership,
patient-driven communication, personalized support, and
mutual trust between physicians and patients.
Illness Ownership
Useful information technology promotes and supports illness
ownership or the capacity of a patient to act on his or her own
behalf when appropriate to directly influence his or her illness
trajectory.45 To own illness, patients must have the power to
knowingly participate in their care. They must possess an
awareness of their illness, the choice to decide whether they
wish to create change, and be afforded the latitude and legit-
imization to act on their own intentions.46 If patients perceive
ownership of their illness, they are more likely to use tools
that facilitate the management and solving of their prob-
lems.47
. And if you actually can see your past and see your test re-
sults and you know that you’ve cheated, you can kind of relate
why, and take responsibility and make changes . —Interview
2, Line 641
Table 3 illustrates a small part of the interpretative process
taken to arrive at the concept of illness ownership. From sev-
eral discussions and comments in the transcripts on the sub-
ject of patient diaries, words and short phrases have been
extracted verbatim. The words and phrases are simplified,
where possible, as single-word codes. Related codes are
grouped into a set of early concepts or axes. For example,
‘‘writing,’’ ‘‘recording,’’ and ‘‘thinking’’ are all actions that
patients do that result in the diary’s content. The fact that
patients actively determine content gives them power, and
having power over their illness is one aspect of ownership.
310 WINKELMAN ET AL., Patient-Perceived Usefulness of Online EMR
Table 3 j An Example of the Interpretative Process Leading to the Theme of Illness Ownership
Source Quotes Open Code
Interview 1, line 102 Try to do Doing
Record Writing
We thought Recording
Thinking
Interview 2, paragraphs Jump on here Jumping in
1786–1802
Write it in Writing in
Interview 3, Record Recording
paragraphs 378–382
Illness ownership is also born of experiential knowledge: liv-
ing with illness, amassing information, and administering
treatments over time.48,49 For patients with IBD, useful
EMR further promotes illness ownership through on-patient-
demand access to historical data, physician’s notes, test re-
sults, and explanatory information about relevant laboratory
and disease markers, including explanations about things
that patients may consider important but clinicians may not.
Anything you can learn is helpful. When you have something,
you want to know everything about it, the good and the bad.
What can happen to you if you don’t eat properly or medicines
don’t take? I want to know the worst and the best . —Interview
3, Paragraph 71
A useful information technology also facilitates healthy prac-
tices that allow for the creation of change.50 For patients with
IBD, the EMR could (or should) provide a template for ar-
ranging appointments and consultations; a workspace from
which diet, exercise, and illness-related tasks can be man-
aged; a diary to allow contribution to the medical record;
an interface to encourage active participation in research; a re-
source for appropriately formatted information to accurately
and expeditiously fill out disability and insurance forms; and
information that piques the patient’s interest. Control over
the creation of change in their lives is another aspect of illness
ownership.
When a patient describes his or her illness experience, it may
be quite structurally different from the physician’s report. The
physician synthesizes the patient’s story into an efficient, ob-
jective, problem- or disease-focused medical record, and, as
a result, many of the patient’s values and priorities are not
documented.51 From the perspectives of patients with IBD,
their reality is not captured in the medical record, making it
somewhat difficult to recognize the illness experience de-
scribed in the document. The record becomes less meaningful
to the patients as a reflection of their lives and, as a result, less
useful. In contrast, when patients bear the responsibility to
record the facts of their illness experience from their own
perspective, this promotes the patient’s sense of illness
ownership.
. I would have the symptoms and the descriptions and
then a chronology . other medical problems . my own
treatments . self-help treatments did you do . that would
sort of complement the doctors.—Focus Group 3, Subject 2,
Paragraphs 101–117
Selective Code Theoretical
Axial Code (Category) Code
Actions (patients’ actions Power Ownership
drive the record content)
Actions (patients initiate Control Ownership
actions; MD does not
initiate)
Actions (keeping records of Responsibility Ownership
illness events)
Letting the patient’s voice and understanding guide EMR
structure and content and letting the patient’s voice direct
at least some care decisions that emanate directly from the pa-
tient’s documentation promote the sense of illness ownership
that enhances the perceived usefulness of patient-accessible
EMR. Patients can control who has access to and stewardship
of their information. They can also monitor and verify medi-
cal record content, take an active role in managing disease
exacerbations and complications, and perform some autono-
mous decision making.
[It] would be my responsibility to look up my test results and if
it would be low maybe I would have to get in contact with the
doctor; or at that point, you can even . read up on ways to
improve your [problems].—Interview 2, Paragraph 696
Patient-Driven Communication
Electronic communication offers opportunities for meaning-
ful patient participation in illness management, decision mak-
ing, and knowledge creation.3
Let’s say I have an appointment with my doctor, I will look
back to . what I have written . then I see my doctor, [and
the] doctor says ‘‘how are you’’ . at least I have something
to report.—Focus Group 3, Subject 2, Paragraph 211
For patients with IBD, useful EMR integrate such communi-
cation tools as e-mail links, online bulletin boards, chat
rooms, and online consultation services that change the
norms of patient communication with physicians, other care
providers, other patients, and ancillary health personnel.
This communication shift gives patients with IBD greater per-
sonal control over the course of their illness and how interac-
tions with physicians are initiated.
A patient . [has] been in ER and is having surgery and says
[to the doctor] ‘‘you didn’t look at the record’’ or ‘‘you didn’t
take the effort to do it’’ . when the doctor is not necessarily
prompted to review that record . the patient [should have]
a little pop up [reminder] that says if your medical condition
deteriorates, you must notify your physician right away . [it]
puts the responsibility back in the in the hands of the
patient . —Interview 1, Line 1,629
Therefore, for patients with IBD, patient-driven communica-
tion means real change in the dynamic of physician-patient
interaction. They envisage a new type of partnership between
physicians and patients for sharing of information and
Journal of the American Medical Informatics Association Volume 12
responsibilities, a real appreciation for what patients know,
and taking some burden for the patient’s management off
the shoulders of the physician.
I would probably [use the online chart] if I knew . that
the physician would access that prior to an appointment .
If the physician didn’t read it, if it was more of a personal
thing [just for me to do], I don’t know if I would kind of
follow through with that.—Focus Group 3, Subject 1, Paragraph
199
Ultimately, patient-driven communication affirms that the
patient owns his or her illness and that the physician-
patient with IBD relationship evolves from one of passive
dependency and expectation to one of interdependency,
mutual appreciation, mutual support, and shared problem
solving.52
[The doctor] isn’t sitting at the desk opposite you [when
you are entering information], grilling you and asking you
the really pertinent questions to make sure that your facts
are straight . the risk is that the patient incorrectly puts
data in and then your doctor may draw the wrong conclu-
sions . —Interview 1, Lines 1,580–1,604
Personalized Support
A patient’s adjustment to chronic illness is made positive by
the perception of support.53 A chronic incurable illness such
as IBD, as with other uncontrollable events, benefits from
two types of support: nurturing (such as emotional, self-
esteem, and network forms of support) and action facilitat-
ing (such as informational and tangible forms of support).
Ideally, nurturing support is best provided throughout each
patient’s personal life experience, whereas action-facilitating
support is of greater necessity during intermittent periods
of crisis or exacerbations.54
. You want to be able to feel comfortable that you know that
there is someone else at the other end . —Interview 2, Line
1,052
From the IBD patient perspective, useful EMR provide
support that is personalized to the specific needs, wishes,
comprehension capabilities, and experiences of each individ-
ual patient. Informational requirements, emotional support
needs, knowledge, and understanding vary and evolve over
the trajectory of an illness. The scope and depth of this sup-
port should be adjustable to each individual patient as he
or she acquires knowledge and experience. For example,
such easily accessible support could help patients cope
quickly with the inevitable negativity that arises at times in
the long trajectory of IBD (without making them feel they
are wrong or ‘‘bad’’ to be experiencing such negativity), or
if they come in contact with people who misunderstand or
are misinformed about the illness.
I don’t want people to think that I’m contagious . I want
people to know that it affects other parts of your body and it
does other things to you . I want people to know what I
have to go through and I want them to be able to understand
me more . I am not ashamed of what I have and I think that
people should be educated on it . —Interview 3, Paragraph 287
For patients with IBD, useful EMR would therefore have to be
customizable to the abilities, interests, and technological fa-
miliarity each individual patient.50
Number 3 May / Jun 2005 311
Because I don’t deal in this world every day it would be
my main concern that [the patient’s chart page] is as clear
and easy as possible.—Focus Group 3, Subject 3, Paragraph 528
Mutual Trust between Physicians and Patients
Trust is two-way interdependency built on mutual feelings of
freedom and intimacy between one individual and another: in
a trusting relationship, individuals feel secure enough in who
they are so they can open themselves up to others and realize
their goals.55 Trust is important in therapeutic relationships
between patients, health care organizations, and profession-
als56 and is requisite for the promotion of patient self-actual-
ization and empowerment behaviors to improve patient
health outcomes and quality of life.57
So you [and your doctor] are sort of on the same page, so to
speak. That would be pretty helpful.—Focus Group 3, Subject
1, Paragraph 203
The distinction between a patient ‘‘looking at’’ and ‘‘using’’
his or her medical records to improve their health is grounded
in the mutual trust between physicians and patients.58 The
trust embodied in the relationship with their physicians is au-
tomatically transferred to a patient-accessible EMR system
when trusted physicians support such a system.
I assume that my doctor will inform me regardless . [not]
just because I have access to this that I am going to be on
it.—Interview 3, Paragraph 358
Patients with IBD expect that the doctor and the hospital that
they trust have already ensured the privacy, security, and con-
fidentiality of their personal information and the believability
and quality of supportive health information. However, in an-
other study, it was found that a lack of trust in physicians and
the health care system is linked to a patient’s desire to look at
his or her medical records but not necessarily to use the rec-
ords positively toward health gains.59
I found it very difficult to access . personal information about
being misdiagnosed . it was confrontational . —Focus Group
3, Subject 1, Paragraph 73
Paradoxically, even in the presence of ‘‘empowering’’ EMR,
relationships with providers still remain the patient’s ‘‘safety
net’’: supporting patient illness ownership only if the patient
feels that he or she possesses the self-efficacy to do so, while
always supporting patients with professional confirmation
and empathy.48
I don’t want to look up and find out that there’s been an abnor-
mality on my colonoscopy or my mammogram. I think I’d
want to hear from the physician first, then I’d like to go on
and read it myself.—Interview 4, Paragraph 315
Although patients with IBD are more likely to assess a new
information technology as useful if it is implemented in an en-
vironment that they trust, they still welcome the opportunity
to ensure the integrity and meaningfulness of their personal
information.60
. Sending an email to the information system that would up-
date . and then of course they would have your e-mail as
backup . if something goes wrong down the road, they
would say well where did you get that information
from?—Interview 2, Paragraph 972
312 WINKELMAN ET AL., Patient-Perceived Usefulness of Online EMR
Ideally for patients with IBD, trusted relationships affirm
their aptitude to exercise self-care intentions through the
EMR, even if some of these intentions may appear counter
to the traditional patient role61: self-diagnosis, self-triage,
self-referral for consultation with dietitians and other profes-
sionals and direct access to physicians and to a community of
support on demand.
I’d rather [not] wait a couple of days for my doctor to call
me . If it has gone up, that means I have to take one iron
pill a day. If it has gone down, I have to take two. A couple
of days of feeling better, to me, is worth it . A good day for
me is very important.—Interview 3, Paragraph 187
Discussion
Patients in this study evaluate information, technology, and
the monitoring of results in terms of their meaningfulness,
impact, and usefulness in self-care. The vision of useful
EMR of the patient with IBD is a comprehensive informa-
tional, emotional, and tangible support ICT that are more
complex than an EMR access portal alone. This vision also
transcends the original iChart project hypothesis that patient
access to their EMR can be an important adjunct to the deliv-
ery of quality health care.62 In fact, patients think that it is in-
adequate just to provide access to test data, laboratory
reports, and doctor’s notes.
Since patients manage most health problems without any di-
rect participation from health care professionals,63 it makes
sense that patients would define a useful information technol-
ogy as one that supports self-care through the provision of
timely access to services, interaction within the social context
of health care, assistance in the interpretation of biomarkers,
availability of relevant information, and the construction of
healthy practices.16
Implications for Research Transfer
To design and evaluate a new generation of useful ICT for pa-
tient-users, researchers and system designers require sound
theoretical models that adequately capture the determinants
of a patient-user’s motivation to use such technologies.64
Theories of behavioral motivation can provide valid concep-
tual frameworks to assess the influence of individual, tech-
nical, organizational, and social network characteristics on
a potential user’s likelihood to use an information technology,
even before the technology is fully developed and imple-
mented.65
Satisfactory patient-specific theoretical motivational models
to predict ICT use behavior do not yet exist, so they have
to be adapted from other fields and academic traditions.
For example, in the organizational behavior literature, the
Technology Acceptance Model (TAM) provides one possible
theoretical framework for understanding information tech-
nology user behavioral motivation. The TAM has been em-
ployed extensively in the workplace context but has not
been studied in patients.50,66,67 In this model, perceived use-
fulness is considered the strongest motivational predictor of
information technology use. Davis50 has defined perceived
usefulness of information technology as ‘‘the degree to which
a person believes that using a particular system would en-
hance his or her job performance’’ and that ‘‘within an orga-
nizational context, people are generally reinforced for good
performance by raises, promotions, bonuses and other re-
wards.’’ However, since patients with IBD are not employees
of the health care organization, reinforcements for use of in-
formation technology by patients are much less obvious.
Since a patient’s motivation, setting of actual use, and infor-
mational needs are different from employee-users or profes-
sional-users,68 a patient’s perception of ICT usefulness may
be quite distinct as well.
For patients with IBD, tangible technology (e.g., structure,
communication tools, and informational content) and its con-
comitant functionality (e.g., monitoring, management, and
communication) are useful in the long term only if they are
actively made meaningful. The patient is the owner of his
or her life and illness, and the IBD illness experience is
a highly personal and individual experience. Informational
content and record structure should be adjustable to the com-
fort level, wishes, and abilities of each individual patient.
Capacity for communication with care providers should be
streamlined and integrated into the technology. Access to re-
sources should be driven by patient-assessed need, facilitated
during periods of stress or crisis when more immediate action
is needed, but available throughout the longer quiescent peri-
ods of the illness trajectory, when nurturing forms of support
are more appropriate. Integration into the existing relation-
ship of trust between patients and physicians envelops the
ICT with characteristics of reassurance, security, and rele-
vance that maximize the patient-perceived usefulness.
Limitations of the Current Study
Unlike a quantitative study, the ‘‘results’’ of a qualitative study
are extracted largely from descriptions or texts.69 Results are
presented in the form of an emergent theoretical framework
grounded in the textual data and related to the literature,
and the reader is asked to accept the researcher’s interpreta-
tion as truth. The interpretative nature of such inquiry limits
the study’s generalizability, a limitation of most interpretive
qualitative studies that makes many quantitative, positivist
researchers uncomfortable. However, because the ultimate
goal of patient-accessible EMR is to promote the kind of real
patient behavioral changes that can positively influence health
outcomes, having rich narrative data explicating the patient’s
perspective on the technology is both crucial and necessary.
Nevertheless, the research agenda must go further to validate
the theory through study of other patients with IBD, as well as
other groups of patients and even people unaffected by illness.
It is hoped that the emergent theoretical framework of patient-
perceived usefulness can then be applied in a more structured
manner in the form of a validated questionnaire to guide the
formative evaluation of personal health records to empower
patients toward greater participation in illness management.
Conclusion
Health informatics researchers need to expand research strat-
egies for patient accessible EMR if this technology is ever
going to effect desirable patient behavioral changes and im-
prove health outcomes. The patient-user’s perspective on
what constitutes technology usefulness is both distinct from
and complementary to that of physicians and developers.
To build useful ICT tools for patients, direct patient participa-
tion must be made part of all steps in the design and develop-
ment process and, most importantly, in the earliest conceptual
stages. Therefore, interpretative analytic approaches such as
grounded theory should become an integral part of an ICT
research agenda.
Journal of the American Medical Informatics Association Volume 12
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