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Goldsmith DM, Silverman
LB, Safran C. Pediatric Cancer CareLink—supporting
home management of childhood leukemia. Proceedings
of the American Medical Informatics Association Symposium
parents, all with greater than high school education, 92%
had home computers with Internet; 34 clinicians
interviews to determine parents’ and clinicians’
information needs and interest in computer-based tool
needed, satisfaction with providers, current communication
report need for help with medication management, less than
satisfied with help from providers, currently communicate
with providers via telephone; 38% said they used Internet
weekly to find information. Clinicians report decision
support, prescription refill support, and education support
would be important to include for home management tool
and concern about impact on workflow.
Han HR, Belcher AE.
Computer-mediated support group use among parents of children
with cancer—an exploratory study. Computers in
Nursing 2001;19:27-33. [Acceptability]
parents; mean age 38, 75% women, 89% white, >80% at
least some college
home computer with Internet
online support groups for family members of children with
cancer. Groups were part of more than 70 groups hosted
by Association of Cancer Online Resources (ACOR)
were recruited from online support groups and surveyed
about their support group use.
of computer for support
cited by parents: getting information, sharing experiences,
general support, venting of feelings, accessibility, and
use of text. Disadvantages: noise, negative emotions, large
volume of mail, lack of physical contact.
Hassol A, Walker JM,
Kidder D, Rokita K, Young D, Pierdon S, et al. Patient
experiences and attitudes about access to a patient electronic
healthcare record and linked Web messaging. Journal
of the American Medical Informatics Association 2004;11:505-13.
adults recruited from a medical practice, needed own computer;
60% female, 78% between the ages of 31-64, more than 25%
had 4-year degree, almost all were non-Hispanic whites
interaction/electronic medical record; home computer with
is a new feature in the electronic health record (EHR)
in use throughout the Geisinger Health system. This allows
patients to view selected portions of their EHR and exchange
electronic messages with their doctor’s practice.
Application is Web-based, password protected, encrypted.
Patients can view 25 lab tests; review allergies, medications,
and problem lists; view past and future office visits;
review health history; send messages and queries to providers;
and request an appointment, prescription renewals, and
of MyChart users with focus groups conducted to supplement
survey findings, interviews with physicians
of use, completeness and accuracy of information
had little difficulty using the system even among adults
whose education was high school or less. Patients very
satisfied with system. 65% rated their information as complete,
and 75% rated medical history as accurate. Most patients
were not concerned about security/privacy of their medical
information or about learning of test results before discussing
them with their providers. Patients least preferred written
or telephone communication and had higher preference for
in-person and online communication (especially for prescription
renewals, general medical questions). MDs preferred in-person
and telephone communication.
Kaufman DR, Starren
J, Patel VL, Morin PC, Hilliman C, Pevzner J, et al.
A cognitive framework for understanding barriers to the
productive use of a diabetes home telemedicine system.
Proceedings of the American Medical Informatics Association
Symposium 2003:356-60. [Overview, Access, Acceptability]
elderly diabetic Medicare patients living in rural Upstate
New York (mean age=73, mean educational level 12.1 years,
45% had Internet experience, 100% English speaking) and
New York City (mean age=69.6, mean educational level 8.6
years, 36% had Internet experience, 86% Spanish speaking)
home telemedicine system
a home telemedicine-synchronous video-conferencing, electronic
transmission of fingerstick glucose and blood pressure
readings, e-mail to a physician and nurse case manager,
review of clinical data, access to Web-based educational
materials in English and Spanish
testing included a cognitive walkthrough analysis to characterize
task complexity and identify potential problems. Also included
a field usability testing in patients’ homes during
which patients interacted with the equipment and performed
walkthrough highlighted areas of complexity. Usability
testing showed difficulty using the mouse; all of the novice
users had difficulty developing a mental model of the system,
thereby making navigation difficult, impact of health literacy
(e.g., users had difficulty reading/interpreting tables,
understanding charts, recognizing abnormal values).
Kusec S, Brborovic O,
Schillinger D. Diabetes Websites accredited by the
Health on the Net Foundation Code of Conduct: readable
or not? Studies in Health Technology and Informatics
lab computer with Internet
the HONcodeHUNT search engine, 99 Web sites on diabetes
were identified for evaluation. 100-200 words of text were
then copied and pasted into Microsoft Word, where the Flesch
Reading Ease (FRE) and Flesch-Kincaid evaluations were
used to determine readability.
FRE score of 41.7 corresponding to “difficult”
reading ease. Mean Flesch-Kincaid score of 10.8th grade
level. Reading level of average U.S. adult is 8th grade.
86.9% of reviewed Web sites would be too difficult for
the average adult.
Lenert L, Cher D.
Use of meta-analytic results to facilitate shared decision-making.
Journal of the American Medical Informatics Association
1999;6:412-19. [Overview, Acceptability]
patients with benign prostatic hypertrophy (BPH) recruited
over Internet; 81% had at least some college, 71% had e-mail
prostatic hypertrophy: home or clinic computer with Internet
site that measures current symptoms and desired level of
symptom reduction, describes alternative treatments for
BPH and potential effects of alpha blocker terazosin, computes
and displays the probability of user achieving objective
of symptom reduction by using terazosin or placebo
interact with site, then complete online questionnaire.
usefulness of information
found the information useful; 71% believed this type of
information should be discussed before prescribing medications.
Lieberman MA, Golant
M, Giese-Davis J, Winzlenberg A, Benjamin H, Humphreys
K, et al. Electronic support groups for breast carcinoma:
a clinical trial of effectiveness. Cancer 2003;97:920-5.
women with breast carcinoma (CA), recruited from Web sites
related to breast CA and physicians’ offices, hospitals,
community centers. 82% between 40-60, 67% married, 70%
had at least some college
home computer with Internet
electronic support group. Users also had access to private
newsgroup in which they could post pictures, share their
cancer stories, and chat.
groups of eight participants, met for 1.5 hours/week for
16 sessions. Groups were therapist-led, but group determined
pain, posttraumatic growth
problems: provider “timed them out” during
a session. Significant reductions in depression, reactions
to pain. Positive trend posttraumatic growth, expressing
somewhat more zest for life. 67% found group beneficial.
Those who withdrew from study had lower scores in ability
to contain anxiety, more likely to suppress their thoughts
and feelings regarding their illness.
Liederman EM, Morefield
CS. Web-messaging: a new tool for patient-physician
communication. Journal of the American Medical Informatics
Association 2003;10:260-70. [Acceptability]
patients from University of California Davis Primary Care
Network. Also eight clinicians, nine medical assistants,
four office staff
interaction: home computer with Internet
system provides Web-based communication services that are
secure and clinically structured. Offers messaging, non-urgent
asynchronous consults, appointments, medication refills,
and preventive care reminders. Can be used by doctor, authorized
staff, and patients with login and password.
of RelayHealth system participants on use of Web-messaging
3% had never used system, 49.6% once or twice, 26% three
to four times, 21% five or more times. 66.4% found system
very easy, 22.4% easy, 3% found it somewhat difficult,
and one respondent found it very difficult, 61.2% very
satisfied, 24.6 satisfied, 6% somewhat or very dissatisfied
(related to lack of or slow response from clinic). All
who received a timely response were very satisfied. 78%
rated Web messaging better or much better than calling
their doctor, 78% said access to provider was better/much
better with electronic communication. Three reasons patients
used phone included (1) when electronic method was not
yet in place; (2) they wanted quicker answers; or (3) it
was easier to explain the problem over the phone. Patients’
suggestions for improvement include quicker response times
and adding additional features to the site such as lab
results and medical records access.
Masys D, Baker D, Butros
A, Cowles KE. Giving patients access to their medical
records via the Internet: the PCASSO experience. Journal
of the American Medical Informatics Association 2002;9:181-91.
patients enrolled (needed to have own computer and Internet).
Typical patient enrollee was female (73%), well educated
(71% with college degree), excellent computer skills (49%),
and excellent Internet knowledge; 68 physicians
medical record: home computer with Internet
Access to Secure Systems Online (PCASSO): a secure system
allowing patients to view their medical records online.
Requires a multistep procedure for secure login.
usage data and also surveyed users.
penetration of system by intruders during 12-month period.
88% of those patients providing feedback reported the multistep
secure login to be reasonable or very reasonable. 60% of
doctors found it reasonable, but 40% found it unreasonable
or intolerable. Majority of both groups rated having electronic
access to medical records very highly. Both groups were
satisfied with the security safeguards. Large majority
of both groups felt there was very high value in having
access to records via the Internet.
Preece J, Nennecke
B, Andrews, D. The top five reasons for lurking: improving
community experiences for everyone. Computers and Human
Behavior 2004;20:201-23. [Acceptability]
survey responders, of whom 219 were lurkers; 79% had at
least some college, 56.3% women
support: home computer with Internet
bulletin board communities
posted to a random sample of MSN bulletin board communities.
Total of 375 communities selected. Lurkers’ responses
were compared to posters’ responses.
difference between lurkers and posters based on demographics.
Found that both groups go online looking for information.
Lurkers less enthusiastic about community membership, posters
have a greater sense of belonging and satisfaction with
the community. Lurkers state they do not post because just
reading is enough, still learning about the group/shy,
being helpful by not posting if nothing new to offer, nothing
to offer, no requirement to post, want to remain anonymous,
could not make the software work to be able to post.