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Expanding the Reach and Impact of
Consumer e-Health Tools

June 2006

Office of Disease Prevention and Health Promotion logo

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Appendix 3. Chapter 3 Literature Review Summary (Part 6)

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Table Reference Number/Authors/
Text Section
Sample Health Topic Area/
Locus of Use/
Description of the Tool Overview Measures Outcomes
Single Group Designs
60. Goldsmith DM, Silverman LB, Safran C. Pediatric Cancer CareLink—supporting home management of childhood leukemia. Proceedings of the American Medical Informatics Association Symposium 2002:290-4. [Availability] 25 parents, all with greater than high school education, 92% had home computers with Internet; 34 clinicians Cancer: home computer NA Formative interviews to determine parents’ and clinicians’ information needs and interest in computer-based tool Help needed, satisfaction with providers, current communication Parents 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.
61. 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] 73 parents; mean age 38, 75% women, 89% white, >80% at least some college Cancer: home computer with Internet Three 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) Parents were recruited from online support groups and surveyed about their support group use. Use of computer for support Advantages 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.
62. 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. [Acceptability] 1,421 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 Patient-provider interaction/electronic medical record; home computer with Internet MyChart 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 referrals. Survey of MyChart users with focus groups conducted to supplement survey findings, interviews with physicians Ease of use, completeness and accuracy of information Users 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.
63. 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] 25 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) Diabetes: home telemedicine system IdeaTel: 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 Usability 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 specified functions. Cognitive walkthrough, observation Cognitive 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).
64. 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 2003;95:655-60. [Appropriateness] NA Diabetes: lab computer with Internet Diabetes Web sites Using 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. Readability Mean 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.
65. 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] 191 patients with benign prostatic hypertrophy (BPH) recruited over Internet; 81% had at least some college, 71% had e-mail addresses Benign prostatic hypertrophy: home or clinic computer with Internet 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 Users interact with site, then complete online questionnaire. Perceived usefulness of information 93% found the information useful; 71% believed this type of information should be discussed before prescribing medications.
66. 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. [Acceptability] 32 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 Cancer: home computer with Internet Closed electronic support group. Users also had access to private newsgroup in which they could post pictures, share their cancer stories, and chat. Four groups of eight participants, met for 1.5 hours/week for 16 sessions. Groups were therapist-led, but group determined discussion. Depression, pain, posttraumatic growth Technical 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.
67. 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] 238 patients from University of California Davis Primary Care Network. Also eight clinicians, nine medical assistants, four office staff Patient-provider interaction: home computer with Internet RelayHealth 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. Survey of RelayHealth system participants on use of Web-messaging system Usability, satisfaction Only 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.
68. 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. [Acceptability, Applicability] 41 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 Electronic medical record: home computer with Internet Patient-Centered Access to Secure Systems Online (PCASSO): a secure system allowing patients to view their medical records online. Requires a multistep procedure for secure login. Monitored usage data and also surveyed users. Usability, satisfaction No 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.
69. 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] 1,188 survey responders, of whom 219 were lurkers; 79% had at least some college, 56.3% women Social support: home computer with Internet MSN bulletin board communities Survey posted to a random sample of MSN bulletin board communities. Total of 375 communities selected. Lurkers’ responses were compared to posters’ responses. Attitudes toward posting No 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.

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