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A Web-Based Patient Information System - Identification of

Patients' Information Needs

Article in Journal of Medical Systems · July 2003

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Journal of Medical Systems, Vol. 27, No. 3, June 2003 (°

C 2003)

A Web-Based Patient Information

System—Identification of Patients’ Information Needs
Linda Hassling,1,2,6 Ankica Babic,2,3 Urban Lönn,4 and Henrik Casimir-Ahn5

Research described here was carried out to explore possibilities of creating a web-based
patient information system within the areas of thoracic surgery. Data were collected
to distinguish and assess the actual information needs of patients (1) prior to surgical
treatment, (2) before discharge, and (3) 8 months after the hospitalization using a
follow-up questionnaire. Interviews were performed with patients undergoing heart
surgery. The study included material of 19 consecutive patients undergoing coronary
artery bypass surgery (12) and valve replacement (7), age 35–74, 13 males and 6 females
with nonacademic background. Patient satisfaction with given information was high.
Analysis of the interviews held at the hospital resulted in seven different categories
describing and giving a picture of the patients’ information needs and apprehension of
received care. The results found in this study can be used as guidance for developers
in their design and development process of a health information system.
KEY WORDS: patient information; consumers; health information system; information needs;
satisfaction.

INTRODUCTION

Today, because of the advent of Internet technology and the possibility to reach
many consumers, the physicians have begun to notice an increasing number of pa-
tients who use information technology for health education and communication.(1)
According to Eysenbach(2) it is “increasingly unlikely that health professionals will
encounter patients who have not used information technology to influence their
health knowledge, health behaviour, perception of symptoms, and illness behaviour”
(p. 1716).
Further, there exist research and approaches to develop Health Information Sys-
tems aiming to meet patients’ needs of information regarding health care issues. For
1 Department of Computer and Information Science, Linköping University, SE-581 83 Linköping, Sweden.
2 Department of Biomedical Engineering, Linköping University, Linköping, Sweden.
3 Faculty of Electrical Engineering, University of Ljubljana, Ljubljana, Slovenia.
4 Department of Cardio-Thoracic Surgery, Uppsala University Hospital, Uppsala, Sweden.
5 Linköping Heart Center, Linköping University Hospital, Linköping, Sweden.
6 To whom correspondence should be addressed; e-mail: linda.hassling@ida.liu.se.

247
0148-5598/03/0600-0247/0 °
C 2003 Plenum Publishing Corporation
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248 Hassling, Babic, Lönn, and Casimir-Ahn

instance, (1) MI-HEART is a web-based education tool with tailored information for
patients.(3) (2) PatCIS (Patient’s Clinical Information System), a system that offer
patients tailored information based on their medical records.(4) (3) The Guardian
Angel is a health information system that includes software agents (“Guardian
Angels“) that integrate health-related information.(5) The problem, however, usu-
ally is that a critical part of human–computer interaction is overlooked, e.g., when it
comes to the development and design of a health information system.
The most important issue when developing a health information system is that
its design and content is anchored on what the consumers really want and need.(6) It
is also important to consider consumers life situation and how a health information
system will come to fit into their lives, considering lifestyles, computer literacy and
accessibility, and willingness to use electronic information sources.(7) Designers who
are assuming what the future user wants or needs are playing a daring venture.
Previous studies in this area, aimed to investigate whether an health information
system for children and their parents would improve the quality of care, found that
the system was “little used and had marginal effects on the quality of care.”(8) This
was due to the fact that needs of the intended users have not really been investigated
and the designers had designed the system on the basis of their own assumptions.
Indeed, the idea with a personalized health information system is to help patients
understand and make them confident to make decisions about their own health and
to educate them about their choices and obligation to take charge over their own
situation. In this regard, it is easier today to achieve this education and informative
state with the technology of Internet along with other kind of media that is present.(2)
An educated patient with the strength and knowledge to discuss and take control
over his or her health situation might even improve the traditional way of doctor–
patient communication.(9) Important to add is that a health information system in
health care management is by no way meant to replace any physician. It is rather
seen as a complement or an educator to help the consumer to act toward his own
good health.
The challenge is however to assure that those patients are presented with correct
information to base their knowledge and decisions on. It is also important that the
patient can base his own assessment and decisions in a healthy and correct way. But
most important is that such a health information system is what the patients and
consumers really want. If it is based on the developers’ preconceived assumptions,
the system is facing the risk of not being used at all.
We aim in this paper to explore possibilities of creating a health information
system for patients within the areas of thoracic surgery. A key component in this paper
is that it starts out from the patients’ point of view and explores how their needs of
information have influence on the content and design of a health information system.

METHODOLOGICAL APPROACH

Data were collected to distinguish and assess the actual information needs of
patients before and after heart surgery. For this reason in-depth interviews were
performed with patients undergoing heart surgery, there the main idea was to look
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A Web-Based Patient Information System 249

Table I. Methods Used in the Study

Methods Description
In-depth interviews To give the patients an opportunity to express their feelings and
experience over expectations and received information
Phenomenography The method is used to analyze the interview material, aiming to find
concepts about information needs based on patients’ statements in
the interview

at and evaluate the process of information giving as a part of patient management.

In specific, when collecting data we kept in mind the need to focus on how infor-
mation needs and expectations from patients can be used when designing a health
information system within the area of health care.
The study was therefore conducted through several stages and employed a num-
ber of qualitative data analyses listed in Table I.

Study Design
To find concepts and understandings about information needs among the pa-
tients, in-depth interviews were carried through. The interviews were further
semistructured in the sense that the interview guide was supposed to function as as-
sistance for the interviewer during the conversational interview.(10) Two interviews
were held, one the day prior to surgery, and one the day before discharge. After
8 months the study was concluded with a follow-up study, using as tool a conven-
tional mail because of the geographical distances. Interview as an information acquir-
ing form was then replaced with a questionnaire consisting of nine open questions
to be addressed in free text (see Table IV).

Subjects
The study included material of 19 consecutive patients undergoing coronary
artery bypass surgery (12) and valve replacement (7), age 35–74, 13 males and
6 females with nonacademic background and mainly working class. The study took
place at Linköping Heart Center at the University Hospital in Linköping, Sweden,
with consent of all patients.

Procedure for the Data Collection

In connection to the patient’s arrival at the ward, the interviewer was intro-
duced and the patient was informed about the study. All patients received written
information from the interviewer about the study, its aim, and what would happen
during the study. It was also made clear that the patients were free to terminate the
participation in the study at any time and that everything said or observed would
be treated confidentially. The patients were asked for approval to be included in
the study (consent was given orally). If the patient gave consent to be included in
the study, the interviewer followed him or her throughout the day to get a feeling
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250 Hassling, Babic, Lönn, and Casimir-Ahn

Table II. Interview 1

Themes
Received information
before the arrival at
the hospital
Expectations of the
hospitalization
Experience of received
information before
the surgery
Main questions
¥ How much information did you receive from your local hospital?
¥ What did you know before you arrived here?
¥ Have you searched for information by yourself?
¥ What kind of information did you expect to receive during your
hospitalization?
¥ Was it something you didn’t want to have information about?
¥ Do you consider to have received enough information?
¥ Was it anything you didn’t understand?
¥ Was it something that you wanted to ask but didn’t mention?
¥ From whom did you receive most information?
¥ Did you get enough information about your surgery/your disease?

of what the patient experienced and went through during the day. At the evening,
before the surgery, the first interview was held. All interviews were accomplished
in a private room without disturbance from other patients or nursing staff. For all
patients the interview began with more general questions, concerning demographic
and socioeconomic data and the patient’s condition. The rest of the interview was
then carried through with help of the interview guide, which was organized around
three different themes, presented in Table II.
The days following the surgery patients were paid a visit in order to retain con-
tact. The day prior to discharge, the second interview was held. The interviews were
held in the same manner as the first, in a private room with introductory conversation
followed by questions in the interview guide, this time arranged around three other
themes (Table III).
All interviews were recorded with help of a minidisc (MZ-R900) with belonging
microphone (ECM-ZS90). The minidisc was placed between the interviewer and the
patient. Before every interview the patients were once again informed about their
free choice to terminate the participation in the study and that all recorded material
would be treaded confidentially. All patients gave consent to tape the conversation.
The follow-up questionnaire (Table IV) was sent to all 19 patients, 8 months after
the hospital stay. The patients were requested to send back the form with the stamped
envelope that followed the questionnaire. After a reminder a total of 12 patients had

Table III. Interview 2

Themes Examples of questions
Experience of received ¥ Is it some information that you lack that you would like to have
information before received before the surgery?
the surgery ¥ Is it something you would like to know more about?
Experience of ¥ Who was easiest to talk to?
communication ¥ Who spoke most clearly?
Future information ¥ Are you happy about the information you received about your surgery?
¥ Your journey home is approaching, is it some kind of information you
are interested in then?
¥ Do you have any thoughts or questions about the future?
Computer and Internet ¥ If all information you have received here would be reachable on the
literacy Internet, would use be interested then?
¥ Do you often use computers and Internet?
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A Web-Based Patient Information System 251

Table IV. Questions in the Follow-up Questionnaire

Questions in the follow-up questionnaire
1. What is your opinion about the information and treatment you received during your stay at the
hospital in connection with your heart surgery?
2. How did you experience the interaction with the physicians?
3. How did you experience the interaction with your contact nurse?
4. Did you ever feel that you didn’t get outlet of your questions or feelings? If yes, do you
remember in which situation?
5. How big importance does contact with other people in the same situation as you play? e.g.
patients lying on the same ward as you.
6. Did you feel that you participated in your own health care?
7. Have you felt a need for information or did you have questions, after you returned home from
the hospital?
8. If you have (or picture that you have) experience of computers and Internet, do you think that
you would use the Internet for searching after information before and after your surgery?
9. Which advantages and disadvantages to you consider searching for information on the Internet
would be?

returned the forms. The answer rate of 63% was found acceptable considering that
the majority of patients are elderly. No distribution with respect to gender or age
could be reported since the questionnaire was anonymous.

Analysis
The analysis of the interview material was carried through with help of phe-
nomenograpichal methodology. The choice of the methodology was done because
it is an approach where people’s different understandings, experiences, and atti-
tudes about a phenomena can be captured and described in mutually exclusive,
but yet logically related categories.(11) It is necessary to remember that the goal
of the method is to develop and reach an understanding about a person’s concep-
tion or experience of a phenomenon.(12) There is important to distinct “the way
something is” and “the way something is perceived to be,” and this distinction is cen-
tral for phenomenography, which aims to identify conceptions underlying people’s
statements.(12,13) Main data collection method is interview that preferably is recorded
and thereafter transcribed.
In the next step and according to phenomenography(12) the analysis was per-
formed in four steps. First familiarization, where the interview material was read
through several times with the purpose of acquainting to the content and generate
an overall impression. Thereafter similarities and differences between different sig-
nificant statements central to the themes in the interviews were observed. This step
was followed by a categorization of these statements based on previous compari-
son and questioning. At last the different categories of statements are compared to
consider their mutual exclusiveness; no category is allowed to overlap each other.
For validation the different resulting categories were compared with the transcribed
material, and statements from the patients are used to illuminate the categories.
The answers from the follow-up questionnaire have been written down verbatim
and analyzed with help of phenomenography as mentioned previously.
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252 Hassling, Babic, Lönn, and Casimir-Ahn

RESULTS

Results from analysis of the interview and follow-up questionnaire are presented
below.

Interviews
Analysis of the interviews held at the hospital resulted in seven different cate-
gories (Table V) describing and giving a picture of the patients’ information needs
and apprehension of received care. Investigated phenomena were patients’ concep-
tion about their situation and treatment during the hospitalization.
In Table V we can see seven different categories from which conclusions about
information needs and apprehension about received care can be drawn. To be able
to interact and communicate with other patients in the same situation is impor-
tant. This is due to the fact that noticing their well-being after a surgery also com-
forts patients facing surgery. Patients feel inferior to the physicians and report a

Table V. Results of the Analysis According to Phenomenography

For correspondence and validation of
Categories Description and explanation the categories: selected statements
Importance in It is important for patients to “. . . talking with people that already
meeting peers meet people in the same been through the surgery . . . and
situation as themselves they seem to feel so well”
Physician vs. Patients experience a lack of “It is them who knows best, I know
patients knowledge and feel inferior to nothing about that,” “You don’t
the physician really understand much of what
they are saying”
Confidence Patients who previously have “[I] have some experience since last
through undergone surgery feel secure time,” “. . . I have been through this
experience in their situation before”
Confidence by It is of big importance for the “I want to see the doctor who will
recognition patients to meet their operate on me, absolutely, that is
physicians and other medical my opinion,” “you should at least
staff more than once say hello and see the doctor who is
operating on you”
Confidence by The patients feel safe and secure “The contact nurse, she gave me the
receiving when receiving attention from whole picture,” “This first nurse I
attention the care co-coordinator talked to, she was really good to get
in contact with, she informed me
about everything”
Importance of Patients consider that they “I got the best information from the
information receive the most important doctor, he who would operate on
based on information from the me. “It was the doctor”
medical physicians
expertise
Patient Patients want to have more “The talk about your vitals, and you
empowerment control over and participation are just lying there and isn’t a part
in decisions concerning their of the conversation or discussion,”
medical situation “it seems like it is a secret, and I
would like to have more insight in
my journal,” “I would like to have
more information about the takings
of specimens”
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A Web-Based Patient Information System 253

feeling of “he knows better” and as a patient you are not supposed to interfere
with the physicians’ knowledge. Having experience from previous surgeries or be-
ing comforted and informed by the nursing staff created a feeling of confidence
and recognition among the patients. It was important for the patients to meet their
treating doctor, i.e., thoracic surgeon, from whom they also consider to get the
most important information (this result also included other kinds of physician, e.g.,
the anesthesiologist). At last the patients report they want to have more insight
into and control over their own situation when being hospitalized. They think that
information about their health status is hidden from them or that it is not their
business.

Follow-Up Questionnaire
Resulting categories from the phenomenographical analysis of answers from the
follow-up questionnaire is presented in Table VI (all quotations are translated from
Swedish).
As we can see, Table VI presents five groups resulting from an analysis with
phenomenography. Relating to the patient satisfaction is both surgical treatment
and information describing it. Acknowledged were quality of patient management
and a value of having a contact nurse as a part of the team. Most of the patients,
even older ones, assumed a potential of the Internet to fill in some information
gaps occurring during postoperative recovery. Feelings of insecurity and being left
alone had caused problems in some cases due to the lack of information and
advice.

Table VI. Results From the Follow-Up Questionnaire

Ways to satisfy
information needs
Patient management
Contact nurse
Other people in the
same situation
Need for information
after discharge
Potentials of Internet
Patient satisfaction
• All patients were pleased with at hospital received care. Voices
from the patients say “perfect,” “very good,” “satisfactory,” “it
felt like one could ask anyone about anything.” Some patients
notified that information prior to arrival was minimal
• Patients experienced that they were taken care of, and have
received support and information, especially from the contact
nurse who took care of them the first day of hospitalization
• Meeting other people in the same situation were of high
importance; “Others seem to be doing well, that was positive for
me to see,” “ in some way it feels good to see other people in the
same situation and to talk to them”
• Information after returning home is important and wished for; “in
the hospital one feels save, but after returning home one has a lot
of thoughts and concerns,” “yes, a big need for information and
asking questions.” Some patients felt fine at home
• Seen as a potential for younger people; “mostly for younger
patients that have access to and knowledge about computers,”
“Being prepared makes one less nervous.” Some patients
reported that they tried to find information on the Internet, but
“had not found much,” though they thought “it would be of a
good assistance”
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254 Hassling, Babic, Lönn, and Casimir-Ahn

LESSONS LEARNED

Patient information needs were explored in detail to avoid building a health

information system on false assumptions and speculations regarding patients’ needs
and wishes. There are examples of systems that have failed expectations because
of the lack of insight.(8) We tried with help of interviews to formulate needs of
patients included in this study and also assess their satisfaction with received infor-
mation and care. The interviews were analyzed with help of phenomenography to
capture the patients’ different conceptions about their situation and treatment dur-
ing the hospitalization. The analysis resulted in seven different categories that have
their implication of importance for health information system design, these will be
discussed below.
The importance of meeting peers cannot be replaced with an information system,
since it is obvious that the personal contact with other patients is valuable. However,
an information system could complement this important aspect perhaps by offering
personal stories, other patient cases, and video recordings. Another possibility would
be to encourage peer group discussions using the system facilities and background.
In such a case some professional advice might be given on the request of patients.
The traditional way of looking on the social roles in physician–patient commu-
nication is changing. The distance and respect for physicians are quite common in
elderly patients, and patients fear to be perceived as laic and inferior. A solution can
be to educate patients, increase their knowledge, and give them on opportunity to be
informed about their problem and the area of expertise. An information system can
present medical knowledge, both general and personal connected to the patients’
unique situation, which might prepare patients to be more open and ask questions
concerning their particular situations. For us an informed patient is empowered,
which is a strong argument for introducing an information system.
Patients’ well-being might benefit from meeting different members of medical
staff involved in their treatment. Presenting health care professionals and informing
about their particular roles in the patient care contributed to patient satisfaction.
This is an important consideration when designing an information system.
Our results showed that patients feel secure and satisfied when they are taken
care of, especially by contact nurse. It helps overcome obstacles like stress, being
overwhelmed with information, and feeling disoriented. Often it is difficult for a pa-
tient to grasp all given information, which is easily compensated by being taken care
of and led through the process. Information system might be very useful in days prior
to arrival to give a good overview and preparation for the whole treatment. This kind
of more general information about the hospitalization, routines, and what to expect
can be mediated through the information system. If patients arrive prepared and
supported by information they might be less stressed with amount of information to
process. Caregivers can then concentrate on giving care instead of lots of information.
Information received by physicians is evaluated as most important. This suggests
that information should be divided between general (logistic) information given by
nurses and medical information from the physicians regarding surgery outcomes and
risks that is often more technical. On practical level it is advisable to distinguish the
information.
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A Web-Based Patient Information System 255

The last category found in our results is about patient empowerment. Patients
want to have more insight into their own health care situation. They might benefit
for taking a more active approach to understanding and managing their disease and
postoperative recovery. A needed change in lifestyle could start even by encouraging
patients to use Internet-based resources, quality of life questionnaires, and e-mail
contact with health care professionals.
Additionally, the follow-up interview confirmed results found in the interviews.
They also implied value of information given at the point of care which would suggest
that similar, adjusted information content could be presented in an electronic form.
Patients experience a lack of information after discharge, implicating a need for a
health information system also during the recovery period.

DISCUSSION

Patients in this study are given logistic information during the conversation with
the contact nurse. The nurse also asks the patient for information, e.g., about health,
status, habits, and divergences. The goal with this dialogue is twofold, mainly to plan
for the patient’s hospitalization in a best way possible, and also to give the patient
an opportunity to ask questions about what will happen to him/her. This meeting
has shown to be an important resource for the patient, and creates security and
confidence. This indicates how important it is for the patient to be prepared before a
surgery when it comes to logistic information. A health information system can fill this
need. With help of web-based information patients can be informed whenever they
want to. Another indicator for the need of a health information system is patients’
dissatisfaction and disapproval due to their inability to influence their own health(14)
and their feeling of being inferior to physicians or other health care professionals.
With health information system they will get the opportunity to be empowered and
an increased ability to influence their health during interaction with the physician.
It is apparent that repetition and plainness of information satisfy patients to a
higher degree and meet their information needs.(15) This is a strong argument to offer
consumers information via an information system where they get a chance to reach
information at their own pace and repeatedly return for more information.
There is a big potential of educated patients, families, and the power of self-help.
Patients will with information get the power to decide whether to visit a physician or
not. Instead of visiting the physician for minor injuries or colds, the consumers can
consult an information system and get advice on how to assess their own health status,
maybe how to treat themselves or get the advice to consult a physician. Potential areas
of interest or reasons to consult an patient information system is to get a second
opinion, to keep a self-employed medical record, getting help with questions to ask
the physician, help with dealing with physician, and to practice own help care.(9)

CONCLUSIONS

When dealing with Consumer Health Informatics and health-related informa-

tion on the web there is seldom focus on elderly people. A population that to a
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256 Hassling, Babic, Lönn, and Casimir-Ahn

high degree is in need of information and education, but to often, is not able to par-
ticipate or use the Internet Technology and web-based solutions. One barrier that
might impede elderly people is no access to a computer or the Internet.(16) Another
barrier is the experience of using computers and the Internet and attitudes toward
computers.
Health care provided with information systems is believed to have many advan-
tages, e.g., improving patients’ abilities to help themselves and make choices on the
basis of correct and clinical information without being forced to visit a physician in
an initial state. Another advantage is to inform, reassure, and calm worried families
and relatives. Further to educate and increase patients’ knowledge to discuss the
information they receive from health care professionals.
A question considering an implementation using Internet was really briefly
touched mainly to get a feedback regarding acceptance of such a system. Any more
detailed inquiry would need to be based on some prototype of the future system
to make a meaningful assessment of needs and preferences. However, the patients’
understanding of potentials of Internet to provide information was unreserved.
When developing health information system it is important to consider patient
satisfaction and information needs, since patients’ wants and needs must be in focus.
The goal should not be to replace physicians, it should rather be a complement to
help consumers act toward their own good health. The results found in this study
can be used as guidance for developers in their design and development process of
a health information system.
The lack that health information has on the Internet today is the spread and
scattered resources of health care information on the web, with changing quality and
sometimes contradictory content. The problem is that there exist “too many websites,
with too little useful information” as one member said in a survey conducted by the
Consumer Health Informatics Working Groups, with the purpose of clarifying the
definition of CHI.(1) A personalization of information in the health information
system is of high importance according to previous studies,(17) e.g., information given
by the system could initially be tailored using patient demographic and personal
data.

Future Research
For future work within this area it could be interesting to explore how different
groups of patients differ regarding age, sex, social background, education, and expe-
rience with computers. Another interesting issue is experience with health care. Bad
experience might create resistance against the culture of health care.
Expectations from patients are important to consider and to find out what they
expect from the health care and how this can influence their use and acceptance of
a health information system that is available on the Internet.
With a health information system it is likely that the patient will switch from
the passive part in the physician–patient interaction to an active patient that with
help of empowerment and information will take charge over his own health and
well-being. How this affects the relationship and interaction between the physician
and his patient is therefore highly important to consider and study.
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A Web-Based Patient Information System 257

ACKNOWLEDGMENTS

This research was funded by the Center for Industrial Information Technol-
ogy (CENIIT: Project 00.09) of Linköping University, Sweden, and The Swedish
Research Institute for Information Technology (SITI AB) in Stockholm, Sweden.

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