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Patients? Engagement With ?Sweet Talk? ? A Text Messaging Support System for Young People With Diabetes
Background: Guidelines for optimizing type 1 diabetes in young people advocate intensive insulin therapy coupled with personal support from the health care team. ?Sweet Talk? is a novel intervention designed to support patients between clinic visits using text messages sent to a mobile phone. Scheduled messages are tailored to patient profiles and diabetes self-management goals, and generic messages include topical ?newsletters? and anonymized tips from other participants. The system also allows patients to submit data and questions to the diabetes care team. Objectives: The aim was to explore how patients with type 1 diabetes interact with the Sweet Talk system in order to understand its utility to this user group. Methods: Subjects were 64 young people with diabetes who were participating in the intervention arms of a randomized controlled trial. All text messages submitted to Sweet Talk during a 12-month period were recorded. Messaging patterns and content were analyzed using mixed quantitative and qualitative methods. Results: Patients submitted 1180 messages during the observation period (mean 18.4, median 6). Messaging frequency ranged widely between participants (0-240) with a subset of 5 high users contributing 52% of the total. Patients? clinical and sociodemographic characteristics were not associated with total messaging frequency, although girls sent significantly more messages unrelated to diabetes than did boys (P = .002). The content of patients? messages fell into 8 main categories: blood glucose readings, diabetes questions, diabetes information, personal health administration, social messages, technical messages, message errors, and message responses. Unprompted submission of blood glucose values was the most frequent incoming message type (35% of total). Responses to requests for personal experiences and tips generated 40% of all the incoming messages, while topical news items also generated good responses. Patients also used the service to ask questions, submit information about their self-management, and order supplies. No patients nominated supporters to receive text messages about their self-management goals. Another option that was not used was the birthday reminder service. Conclusions: Automated, scheduled text messaging successfully engaged young people with diabetes. While the system was primarily designed to provide ?push? support to patients, submission of clinical data and queries illustrates that it was seen as a trusted medium for communicating with care providers. Responses to the newsletters and submission of personal experiences and tips for circulation to other participants also illustrate the potential value of such interventions for establishing a sense of community. Although participants submitted relatively few messages, positive responses to the system suggest that most derived passive support from reading the messages. The Sweet Talk system could be readily adapted to suit other chronic disease models and age groups, and the results of this study may help to inform the design of future text message support interventions.
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Supporting Emerging Disciplines with e-Communities: Needs and Benefits
Background: Science has developed from a solitary pursuit into a team-based collaborative activity and, more recently, into a multidisciplinary research enterprise. The increasingly collaborative character of science, mandated by complex research questions and problems that require many competencies, requires that researchers lower the barriers to the creation of collaborative networks of experts, such as communities of practice (CoPs). Objectives: The aim was to assess the information needs of prospective members of a CoP in an emerging field, dental informatics, and to evaluate their expectations of an e-community in order to design a suitable electronic infrastructure. Methods: A Web-based survey instrument was designed and administered to 2768 members of the target audience. Benefit expectations were analyzed for their relationship to (1) the respondents? willingness to participate in the CoP and (2) their involvement in funded research. Two raters coded the respondents? answers regarding expected benefits using a 14-category coding scheme (Kappa = 0.834). Results: The 256 respondents (11.1% response rate) preferred electronic resources over traditional print material to satisfy their information needs. The most frequently expected benefits from participation in the CoP were general information (85% of respondents), peer networking (31.1%), and identification of potential collaborators and/or research opportunities (23.2%). Conclusions: The competitive social-information environment in which CoPs are embedded presents both threats to sustainability and opportunities for greater integration and impact. CoP planners seeking to support the development of emerging biomedical science disciplines should blend information resources, social search and filtering, and visibility mechanisms to provide a portfolio of social and information benefits. Assessing benefit expectations and alternatives provides useful information for CoP planners seeking to prioritize community infrastructure development and encourage participation.
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Self-Reported Differences in Empowerment Between Lurkers and Posters in Online Patient Support Groups
Background: Patients who visit online support groups benefit in various ways. Results of our earlier study indicated that participation in online support groups had a profound effect on the participants? feelings of ?being empowered.? However, most studies of online patient support groups have focused on the members of these groups who actively contribute by sending postings (posters). Thus far, little is known about the impact for ?lurkers? (ie, those who do not actively participate by sending postings). Objective: In the present study, we explored if lurkers in online patient support groups profit to the same extent as posters do. Methods: We searched the Internet with the search engine Google to identify all Dutch online support groups for patients with breast cancer, fibromyalgia, and arthritis. Invitations to complete an online survey were sent out by the owners of 19 groups. In the online questionnaire, we asked questions about demographic and health characteristics, use of and satisfaction with the online support group, empowering processes, and empowering outcomes. The online questionnaire was completed by 528 individuals, of which 109 (21%) identified themselves as lurkers. Results: Lurkers (mean age 47 years) were slightly older than active participants (mean age 43 years, P = .002), had a shorter disease history (time since diagnosis 3.7 years vs 5.4 years, P = .001), and reported lower mental well-being (SF 12 subscore 37.7 vs 40.5, P = .004). No significant differences were found in other demographic variables. Posters indicated visiting the online support groups significantly more often for social reasons, such as curiosity about how other members were doing, to enjoy themselves, as a part of their daily routine (all P < .001), and because other members expected them to be there (P = .003). Lurkers and posters did not differ in their information-related reasons for visiting the online support group. Lurkers were significantly less satisfied with the online support group compared to posters (P < .001). With regard to empowering processes such as ?exchanging information? and ?finding recognition,? lurkers scored significantly lower than posters. However, lurkers did not differ significantly from posters with regard to most empowering outcomes, such as ?being better informed,? ?feeling more confident in the relationship with their physician,? ?improved acceptance of the disease,? ?feeling more confident about the treatment,? ?enhanced self-esteem,? and ?increased optimism and control.? The exception was ?enhanced social well-being,? which scored significantly lower for lurkers compared to posters (P < .001). Conclusion: Our study revealed that participation in an online support group had the same profound effect on lurkers? self-reported feelings of being empowered in several areas as it had on posters. Apparently, reading in itself is sufficient to profit from participation in an online patient support group.
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The Impact of Inaccurate Internet Health Information in a Secondary School Learning Environment
Background: Patients in the United States commonly use the Internet to acquire health information. While a significant amount of health-related information is available on the Internet, the accuracy of this information is highly variable. Objectives: The objective of the study was to determine how effectively students can assess the accuracy of Internet-based material when gathering information on a controversial medical topic using simple keyword searches. Methods: A group of 34 students from the science magnet high school in Houston, Texas searched for the terms ?vaccine safety? and ?vaccine danger? using Google and then answered questions regarding the accuracy of the health information on the returned sites. The students were also asked to describe the lessons they learned in the exercise and to answer questions regarding the strength of evidence for seven statements regarding vaccinations. Because of the surprising revelation that the majority of students left the exercise with inaccurate information concerning the safety and efficacy of vaccines, these same students participated in a follow-up study in which a fact-based vaccine video was shown, after which the assessment of student knowledge was repeated. Results: Of the 34 participants, 20 (59%) thought that the Internet sites were accurate on the whole, even though over half of the links (22 out of 40, 55%) that the students viewed were, in fact, inaccurate on the whole. A high percentage of the students left the first exercise with significant misconceptions about vaccines; 18 of the 34 participants (53%) reported inaccurate statements about vaccines in the lessons they learned. Of the 41 verifiable facts about vaccines that were reported by participants in their lessons-learned statement, 24 of those facts (59%) were incorrect. Following presentation of the film, the majority of students left the exercise with correct information about vaccines, based on their lessons-learned statement. In this case, 29 of the 31 participants (94%) reported accurate information about vaccines. Of the 49 verifiable facts about vaccines that were reported by participants, only 2 (4%) were incorrect. Students had higher correct scores in the ?strength of evidence? exercise following exposure to the video as well. Conclusions: Allowing students to use the Internet to gain information about medical topics should be approached with care since students may take away predominantly incorrect information. It is important to follow up conflicting information with a solid, unambiguous message that communicates those lessons that the instructor deems most important. This final message should be fact based but may need to contain an anecdotal component to counter the strong emotional message that is often delivered by inaccurate Internet sites.
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Real World Use of an Internet Intervention for Pediatric Encopresis
Background: The Internet is a significant source of medical information and is now being shown to be an important conduit for delivering various health-related interventions. Objective: This paper aimed to examine the utility and impact of an Internet intervention for childhood encopresis as part of standard medical care in a ?real world? setting. Methods: Patients diagnosed with encopresis were given a Web-based information prescription to use an Internet intervention for pediatric encopresis. A total of 22 families utilized the intervention between July 2004 and June 2006. A chart review and phone interview were undertaken to collect user characteristics; defecation-related information, including frequency of soiling, bowel movements (BMs) in the toilet, and amount of pain associated with defecation; and information on computer/Internet usage. Three questionnaires were used to examine the utility of, impact of, and adherence to the Internet intervention. Program utilization was obtained from a data tracking system that monitored usage in real time. Results: Overall, parents rated the Internet intervention as enjoyable, understandable, and easy to use. They indicated that the Internet intervention positively affected their children, decreasing overall accidents and increasing child comfort on the toilet at home. Of the 20 children who initially reported fecal accidents, 19 (95%) experienced at least a 50% improvement, with a reduction of accident frequency from one fecal accident per day to one accident per week. Although it is not clear whether this improvement is directly related to the use of the Internet intervention, patient feedback suggests that the program was an important element, further establishing Internet interventions as a viable and desirable addition to standard medical care for pediatric encopresis. Conclusions: To our knowledge, this is the first time a pediatric Internet intervention has been examined as part of a ?real world? setting. This is an important step toward establishing Internet interventions as an adjunctive component to treatment of pediatric patients in a clinical setting, particularly given the positive user feedback, possible cost savings, and significant potential for large-scale dissemination.
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