@Article{info:doi/10.2196/jmir.4817, author="Woolderink, Marla and Bindels, APM Jill and Evers, MAA Silvia and Paulus, TG Aggie and van Asselt, DI Antoinette and van Schayck, CP Onno", title="An Online Health Prevention Intervention for Youth with Addicted or Mentally Ill Parents: Experiences and Perspectives of Participants and Providers from a Randomized Controlled Trial", journal="J Med Internet Res", year="2015", month="Dec", day="02", volume="17", number="12", pages="e274", keywords="online-delivered course", keywords="process assessment", keywords="qualitative research", keywords="mental health", keywords="prevention", keywords="adolescents", abstract="Background: Mental illnesses affect many people around the world, either directly or indirectly. Families of persons suffering from mental illness or addiction suffer too, especially their children. In the Netherlands, 864,000 parents meet the diagnostic criteria for a mental illness or addiction. Evidence shows that offspring of mentally ill or addicted parents are at risk for developing mental disorders or illnesses themselves. The Kopstoring course is an online 8-week group course with supervision by 2 trained psychologists or social workers, aimed to prevent behavioral and psychological problems for children (aged 16 to 25 years) of parents with mental health problems or addictions. The course addresses themes such as roles in the family and mastery skills. An online randomized controlled trial (RCT) was conducted to assess the effectiveness of the Kopstoring course. Objective: The aim was to gain knowledge about expectations, experiences, and perspectives of participants and providers of the online Kopstoring course. Methods: A process evaluation was performed to evaluate the online delivery of Kopstoring and the experiences and perspectives of participants and providers of Kopstoring. Interviews were performed with members from both groups. Participants were drawn from a sample from the Kopstoring RCT. Results: Thirteen participants and 4 providers were interviewed. Five main themes emerged from these interviews: background, the requirements for the intervention, experience with the intervention, technical aspects, and research aspects. Overall, participants and providers found the intervention to be valuable because it was online; therefore, protecting their anonymity was considered a key component. Most barriers existed in the technical sphere. Additional barriers existed with conducting the RCT, namely gathering informed consent and gathering parental consent in the case of minors. Conclusions: This study provides valuable insight into participants' and providers' experiences and expectations with the online preventive intervention Kopstoring. It also sheds light on the process of the online provision of Kopstoring and the accompanying RCT. The findings of this study may partly explain dropout rates when delivering online interventions. The change in the (financial) structure of the youth mental health care system in the Netherlands has financial implications for the delivery of prevention programs for youth. Lastly, there are few RCTs that assess the effectiveness and cost-effectiveness of online prevention programs in the field of (youth) mental health care and not many process evaluations of these programs exist. This hampers a good comparison between online interventions and the expectations and experiences of the participants and providers. Trial Registration: Nederlands Trial Register: NTR1982; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=1982 (Archived by WebCite? at http://www.webcitation.org/6d8xYDQbB) ", doi="10.2196/jmir.4817", url="http://www.jmir.org/2015/12/e274/", url="http://www.ncbi.nlm.nih.gov/pubmed/26633244" } @Article{info:doi/10.2196/jmir.5209, author="Ramo, E. Danielle and Thrul, Johannes and Chavez, Kathryn and Delucchi, L. Kevin and Prochaska, J. Judith", title="Feasibility and Quit Rates of the Tobacco Status Project: A Facebook Smoking Cessation Intervention for Young Adults", journal="J Med Internet Res", year="2015", month="Dec", day="31", volume="17", number="12", pages="e291", keywords="smoking cessation", keywords="Facebook", keywords="social media", keywords="young adults", abstract="Background: Young adult smokers are a challenging group to engage in smoking cessation interventions. With wide reach and engagement among users, Facebook offers opportunity to engage young people in socially supportive communities for quitting smoking and sustaining abstinence. Objective: We developed and tested initial efficacy, engagement, and acceptability of the Tobacco Status Project, a smoking cessation intervention for young adults delivered within Facebook. Methods: The intervention was based on the US Public Health Service Clinical Practice Guidelines and the Transtheoretical Model and enrolled participants into study-run 3-month secret Facebook groups matched on readiness to quit smoking. Cigarette smokers (N=79) aged 18-25, who used Facebook on most days, were recruited via Facebook. All participants received the intervention and were randomized to one of three monetary incentive groups tied to engagement (commenting in groups). Assessments were completed at baseline, 3-, 6-, and 12-months follow-up. Analyses examined retention, smoking outcomes over 12 months (7-day point prevalence abstinence, ?50\% reduction in cigarettes smoked, quit attempts and strategies used, readiness to quit), engagement, and satisfaction with the intervention. Results: Retention was 82\% (65/79) at 6 months and 72\% (57/79) at 12 months. From baseline to 12-months follow-up, there was a significant increase in the proportion prepared to quit (10/79, 13\%; 36/79, 46\%, P<.001). Over a third (28/79, 35\%) reduced their cigarette consumption by 50\% or greater, and 66\% (52/79) made at least one 24-hour quit attempt during the study. In an intent-to-treat analysis, 13\% (10/79) self-reported 7-day abstinence (6/79, 8\% verified biochemically) at 12-months follow-up. In their quit attempts, 11\% (9/79) used a nicotine replacement therapy approved by the Food and Drug Administration, while 18\% (14/79) used an electronic nicotine delivery system to quit (eg, electronic cigarette). A majority (48/79, 61\%) commented on at least one Facebook post, with more commenting among those with biochemically verified abstinence at 3 months (P=.036) and those randomized to receive a personal monetary incentive (P=.015). Over a third of participants (28/79, 35\%) reported reading most or all of the Facebook posts. Highest acceptability ratings of the intervention were for post ease (57/79, 72\%) and thinking about what they read (52/79, 66\%); 71\% (56/79) recommended the program to others. Only 5 participants attended the optional cognitive-behavioral counseling sessions, though their attendance was high (6/7 sessions overall) and the sessions were rated as easy to understand, useful, and helpful (all 90-100\% agreed). Conclusions: A Facebook quit smoking intervention is attractive and feasible to deliver, and early efficacy data are encouraging. However, the 1.5-fold greater use of electronic cigarettes over nicotine replacement products for quitting is concerning. ", doi="10.2196/jmir.5209", url="http://www.jmir.org/2015/12/e291/", url="http://www.ncbi.nlm.nih.gov/pubmed/26721211" } @Article{info:doi/10.2196/jmir.5043, author="Majeed-Ariss, Rabiya and Baildam, Eileen and Campbell, Malcolm and Chieng, Alice and Fallon, Debbie and Hall, Andrew and McDonagh, E. Janet and Stones, R. Simon and Thomson, Wendy and Swallow, Veronica", title="Apps and Adolescents: A Systematic Review of Adolescents' Use of Mobile Phone and Tablet Apps That Support Personal Management of Their Chronic or Long-Term Physical Conditions", journal="J Med Internet Res", year="2015", month="Dec", day="23", volume="17", number="12", pages="e287", keywords="adolescents", keywords="asthma", keywords="mobile or tablet apps", keywords="arthritis", keywords="cancer", keywords="chronic disease or condition", keywords="diabetes", keywords="long-term condition", keywords="personal or self-management", keywords="review", keywords="young people", abstract="Background: The prevalence of physical chronic or long-term conditions in adolescents aged 10-24 years is rising. Mobile phone and tablet mobile technologies featuring software program apps are widely used by these adolescents and their healthy peers for social networking or gaming. Apps are also used in health care to support personal condition management and they have considerable potential in this context. There is a growing body of literature on app use in health contexts, thereby making a systematic review of their effectiveness very timely. Objective: To systematically review the literature on the effectiveness of mobile apps designed to support adolescents' management of their physical chronic or long-term conditions. Methods: We conducted a review of the English-language literature published since 2003 in five relevant bibliographical databases using key search terms. Two independent reviewers screened titles and abstracts using data extraction and quality assessment tools. Results: The search returned 1120 hits. Of the 19 eligible full-text papers, four met our review criteria, reporting one pilot randomized controlled trial and three pretest/post-test studies. Samples ranged from 4 to 18 participants, with a combined sample of 46 participants. The apps reported were targeted at type 1 diabetes, asthma, and cancer. Two papers provided data for calculating effect size. Heterogeneity in terms of study design, reported outcomes, follow-up times, participants' ages, and health conditions prevented meta-analyses. There was variation in whether adolescents received guidance in using the app or were solely responsible for navigating the app. Three studies reported some level of patient involvement in app design, development, and/or evaluation. Health professional involvement in the modelling stages of apps was reported in all studies, although it was not always clear whether specific clinical (as opposed to academic) expertise in working with adolescents was represented. The dearth of studies and the small overall sample size emphasizes the need for future studies of the development, evaluation, use, and effectiveness of mobile apps to support adolescents' personal management of their conditions. Conclusions: A key finding of the review is the paucity of evidence-based apps that exist, in contrast to the thousands of apps available on the app market that are not evidence-based or user or professional informed. Although we aimed to assess the effectiveness of apps, the dearth of studies meeting our criteria meant that we were unable to be conclusive in this regard. Based on the available evidence, apps may be considered feasible health interventions, but more studies involving larger sample sizes, and with patient and health professional input at all stages, are needed to determine apps' acceptability and effectiveness. This review provides valuable findings and paves the way for future rigorous development and evaluation of health apps for adolescents with chronic or long-term conditions. ", doi="10.2196/jmir.5043", url="http://www.jmir.org/2015/12/e287/", url="http://www.ncbi.nlm.nih.gov/pubmed/26701961" } @Article{info:doi/10.2196/jmir.4233, author="Flaudias, Valentin and de Chazeron, Ingrid and Zerhouni, Oulmann and Boudesseul, Jordane and Begue, Laurent and Bouthier, Renaud and L{\'e}vrier, Christel and Llorca, Michel Pierre and Brousse, Georges", title="Preventing Alcohol Abuse Through Social Networking Sites: A First Assessment of a Two-Year Ecological Approach", journal="J Med Internet Res", year="2015", month="Dec", day="10", volume="17", number="12", pages="e278", keywords="social networking", keywords="primary prevention", keywords="alcohol consumption", keywords="students", abstract="Background: Prevention strategies to reduce alcohol use/consumption among young people are crucial to reducing alcohol-related deaths and preventing disease. This paper focuses on the effectiveness of a social networking site (SNS) alcohol prevention program targeted toward young people. Objective: We hypothesized that the program would diminish the relation made by participants between alcohol and festive moments, and would result in a reduction of their declared consumption of alcohol at festive moments during the program. We also explored the interaction with the prevention program that was the most efficient. Methods: The prevention program took the form of 3 lotteries over 2 years. The participants periodically received prevention messages, particularly on alcohol and festive moments (eg, videos on Facebook and short message service [SMS] text messages on their mobile phones). For the 3 periods, the participants had to answer questions exploring the level of their belief that alcohol consumption and festive moments are highly associated. A control group that did not participate in the prevention program was asked the same questions over the same number of days for the first 2 periods. During the second period, the participants were asked to answer questions about their alcohol consumption during parties. During the third period, we explored the interaction with the prevention program on the reduction of their belief that alcohol consumption and festive moments are associated. Results: A total of 651 participants (age: mean 22.24, SD 4.10 years; women: n=430) during the first period, 301 participants (age: mean 21.27, SD 3.07 years; women n=199) during the second period, and 305 (age: mean 22.41, SD 4.65 years; women: n=190) during the third period correctly completed the survey. For the control group, 69 students completed the survey during the first period (age: mean 18.93, SD 1.14 years; women: n=59) and 50 during the second (age: mean 20.78, SD 1.94 years; women: n=45). We observed a significant reduction in the association of alcohol with festive moments in the participants over the 2 years (period 1: z=--4.80, P<.001; period 2: z=--2.11, P=.04; period 3: z=--2.30; P=.02), but not in the controls. We also observed a reduction in the number of glasses consumed during festive moments for the participants (z=--2.36, P=.02), but not for the controls during the second period. The third period showed that only the number of days since registration in the program had an impact on the reduction of the association of festive moments and alcohol consumption (t21=3.186, P=.005). Conclusions: The findings of this study suggest that the SNS prevention program is promising in preventing the association of alcohol with festive moments and, more generally, in impacting social norms. ", doi="10.2196/jmir.4233", url="http://www.jmir.org/2015/12/e278/", url="http://www.ncbi.nlm.nih.gov/pubmed/26681577" } @Article{info:doi/10.2196/jmir.5038, author="Gabarron, Elia and Lau, YS Annie and Wynn, Rolf", title="Is There a Weekly Pattern for Health Searches on Wikipedia and Is the Pattern Unique to Health Topics?", journal="J Med Internet Res", year="2015", month="Dec", day="22", volume="17", number="12", pages="e286", keywords="information-seeking behavior", keywords="health information--seeking behavior", keywords="periodicity", keywords="Wikipedia", keywords="chlamydia", keywords="gonorrhea", keywords="HIV", keywords="AIDS", keywords="influenza", keywords="diabetes", abstract="Background: Online health information--seeking behaviors have been reported to be more common at the beginning of the workweek. This behavior pattern has been interpreted as a kind of ``healthy new start'' or ``fresh start'' due to regrets or attempts to compensate for unhealthy behavior or poor choices made during the weekend. However, the observations regarding the most common health information--seeking day were based only on the analyses of users' behaviors with websites on health or on online health-related searches. We wanted to confirm if this pattern could be found in searches of Wikipedia on health-related topics and also if this search pattern was unique to health-related topics or if it could represent a more general pattern of online information searching---which could be of relevance even beyond the health sector. Objective: The aim was to examine the degree to which the search pattern described previously was specific to health-related information seeking or whether similar patterns could be found in other types of information-seeking behavior. Methods: We extracted the number of searches performed on Wikipedia in the Norwegian language for 911 days for the most common sexually transmitted diseases (chlamydia, gonorrhea, herpes, human immunodeficiency virus [HIV], and acquired immune deficiency syndrome [AIDS]), other health-related topics (influenza, diabetes, and menopause), and 2 nonhealth-related topics (footballer Lionel Messi and pop singer Justin Bieber). The search dates were classified according to the day of the week and ANOVA tests were used to compare the average number of hits per day of the week. Results: The ANOVA tests showed that the sexually transmitted disease queries had their highest peaks on Tuesdays (P<.001) and the fewest searches on Saturdays. The other health topics also showed a weekly pattern, with the highest peaks early in the week and lower numbers on Saturdays (P<.001). Footballer Lionel Messi had the highest mean number of hits on Tuesdays and Wednesdays, whereas pop singer Justin Bieber had the most hits on Tuesdays. Both these tracked search queries also showed significantly lower numbers on Saturdays (P<.001). Conclusions: Our study supports prior studies finding an increase in health information searching at the beginning of the workweek. However, we also found a similar pattern for 2 randomly chosen nonhealth-related terms, which may suggest that the search pattern is not unique to health-related searches. The results are potentially relevant beyond the field of health and our preliminary findings need to be further explored in future studies involving a broader range of nonhealth-related searches. ", doi="10.2196/jmir.5038", url="http://www.jmir.org/2015/12/e286/", url="http://www.ncbi.nlm.nih.gov/pubmed/26693859" } @Article{info:doi/10.2196/jmir.5031, author="Medin, Christine Anine and Astrup, Helene and K{\aa}sin, Marlene Britt and Andersen, Frost Lene", title="Evaluation of a Web-Based Food Record for Children Using Direct Unobtrusive Lunch Observations: A Validation Study", journal="J Med Internet Res", year="2015", month="Dec", day="07", volume="17", number="12", pages="e273", keywords="children", keywords="dietary records", keywords="Internet", keywords="observation", keywords="validity", abstract="Background: High-quality, Web-based dietary assessment tools for children are needed to reduce cost and improve user-friendliness when studying children's dietary practices. Objective: To evaluate the first Web-based dietary assessment tool for children in Norway, the Web-based Food Record (WebFR), by comparing children's true school lunch intake with recordings in the WebFR, using direct unobtrusive observation as the reference method. Methods: A total of 117 children, 8-9 years, from B{\ae}rum, Norway, were recruited from September to December 2013. Children completed 4 days of recordings in the WebFR, with parental assistance, and were observed during school lunch in the same period by 3 observers. Interobserver reliability assessments were satisfactory. Match, omission, and intrusion rates were calculated to assess the quality of the recordings in the WebFR for different food categories, and for all foods combined. Logistic regression analyses were used to investigate whether body mass index (BMI), parental educational level, parental ethnicity or family structure were associated with having a ``low match rate'' (?70\%). Results: Bread and milk were recorded with less bias than spreads, fruits, and vegetables. Mean (SD) for match, omission, and intrusion rates for all foods combined were 73\% (27\%), 27\% (27\%), and 19\% (26\%), respectively. Match rates were statistically significantly associated with parental educational level (low education 52\% [32\%] versus high 77\% [24\%], P=.008) and parental ethnicity (non-Norwegian 57\% [28\%] versus others 75\% [26\%], P=.04). Only parental ethnicity remained statistically significant in the logistic regression model, showing an adjusted odds ratio of 6.9 and a 95\% confidence interval between 1.3 and 36.4. Conclusions: Compared with other similar studies, our results indicate that the WebFR is in line with, or better than most of other similar tools, yet enhancements could further improve the WebFR. ", doi="10.2196/jmir.5031", url="http://www.jmir.org/2015/12/e273/", url="http://www.ncbi.nlm.nih.gov/pubmed/26680744" } @Article{info:doi/10.2196/jmir.4762, author="Hildebrand, Janina and Burns, Sharyn and Zhao, Yun and Lobo, Roanna and Howat, Peter and Allsop, Steve and Maycock, Bruce", title="Potential and Challenges in Collecting Social and Behavioral Data on Adolescent Alcohol Norms: Comparing Respondent-Driven Sampling and Web-Based Respondent-Driven Sampling", journal="J Med Internet Res", year="2015", month="Dec", day="24", volume="17", number="12", pages="e285", keywords="Internet", keywords="respondent-driven sampling (RDS)", keywords="WebRDS", keywords="adolescent", keywords="alcohol", keywords="social media", keywords="participant recruitment", abstract="Background: Respondent-driven sampling (RDS) is a method successfully used to research hard-to-access populations. Few studies have explored the use of the Internet and social media with RDS, known as Web-based RDS (WebRDS). This study explored the use of combining both ``traditional'' RDS and WebRDS to examine the influences on adolescent alcohol use. Objective: This paper reports on the recruitment processes and the challenges and enablers of both RDS and WebRDS. It details comparative recruitment data and provides a summary of the utility of both methods for recruiting adolescents to participate in an online survey investigating youth alcohol norms. Methods: Process evaluation data collected from research staff throughout the study were used to assess the challenges and solutions of RDS and WebRDS. Pearson chi-square test (Fisher's exact test if applicable) was used to compare the differences in sociodemographics and drinking behavior between data collected by RDS and WebRDS. Results: Of the total sample (N=1012), 232 adolescents were recruited by RDS and 780 by WebRDS. A significantly larger proportion of Aboriginal or Torres Strait Islander (P<.001) participants who spoke English as their main language at home (P=.03), and of middle and lower socioeconomic status (P<.001) was found in the RDS sample. The RDS sample was also found to have a higher occurrence of past 7-day drinking (P<.001) and past 7-day risky drinking (P=.004). No significant differences in gender, age, past month alcohol use, and lifetime alcohol use were observed between the RDS and WebRDS samples. This study revealed RDS and WebRDS used similar lengths of chains for recruiting participants; however, WebRDS conducted a faster rate of recruitment at a lower average cost per participant compared to RDS. Conclusions: Using WebRDS resulted in significant improvements in the recruitment rate and was a more effective and efficient use of resources than the traditional RDS method. However, WebRDS resulted in partially different sample characteristics to traditional RDS. This potential effect should be considered when selecting the most appropriate data collection method. ", doi="10.2196/jmir.4762", url="http://www.jmir.org/2015/12/e285/", url="http://www.ncbi.nlm.nih.gov/pubmed/26704736" } @Article{info:doi/10.2196/jmir.4378, author="Covolo, Loredana and Rubinelli, Sara and Ceretti, Elisabetta and Gelatti, Umberto", title="Internet-Based Direct-to-Consumer Genetic Testing: A Systematic Review", journal="J Med Internet Res", year="2015", month="Dec", day="14", volume="17", number="12", pages="e279", keywords="genetic testing", keywords="direct-to-consumer", keywords="Internet", keywords="online market", keywords="systematic review", abstract="Background: Direct-to-consumer genetic tests (DTC-GT) are easily purchased through the Internet, independent of a physician referral or approval for testing, allowing the retrieval of genetic information outside the clinical context. There is a broad debate about the testing validity, their impact on individuals, and what people know and perceive about them. Objective: The aim of this review was to collect evidence on DTC-GT from a comprehensive perspective that unravels the complexity of the phenomenon. Methods: A systematic search was carried out through PubMed, Web of Knowledge, and Embase, in addition to Google Scholar according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) checklist with the key term ``Direct-to-consumer genetic test.'' Results: In the final sample, 118 articles were identified. Articles were summarized in five categories according to their focus on (1) knowledge of, attitude toward use of, and perception of DTC-GT (n=37), (2) the impact of genetic risk information on users (n=37), (3) the opinion of health professionals (n=20), (4) the content of websites selling DTC-GT (n=16), and (5) the scientific evidence and clinical utility of the tests (n=14). Most of the articles analyzed the attitude, knowledge, and perception of DTC-GT, highlighting an interest in using DTC-GT, along with the need for a health care professional to help interpret the results. The articles investigating the content analysis of the websites selling these tests are in agreement that the information provided by the companies about genetic testing is not completely comprehensive for the consumer. Given that risk information can modify consumers' health behavior, there are surprisingly few studies carried out on actual consumers and they do not confirm the overall concerns on the possible impact of DTC-GT. Data from studies that investigate the quality of the tests offered confirm that they are not informative, have little predictive power, and do not measure genetic risk appropriately. Conclusions: The impact of DTC-GT on consumers' health perceptions and behaviors is an emerging concern. However, negative effects on consumers or health benefits have yet to be observed. Nevertheless, since the online market of DTC-GT is expected to grow, it is important to remain aware of a possible impact. ", doi="10.2196/jmir.4378", url="http://www.jmir.org/2015/12/e279/", url="http://www.ncbi.nlm.nih.gov/pubmed/26677835" } @Article{info:doi/10.2196/jmir.4847, author="Tieu, Lina and Sarkar, Urmimala and Schillinger, Dean and Ralston, D. James and Ratanawongsa, Neda and Pasick, Rena and Lyles, R. Courtney", title="Barriers and Facilitators to Online Portal Use Among Patients and Caregivers in a Safety Net Health Care System: A Qualitative Study", journal="J Med Internet Res", year="2015", month="Dec", day="03", volume="17", number="12", pages="e275", keywords="personal health records", keywords="electronic health records", keywords="chronic disease", keywords="caregivers", keywords="health literacy", keywords="safety-net providers", abstract="Background: Patient portals have the potential to support self-management for chronic diseases and improve health outcomes. With the rapid rise in adoption of patient portals spurred by meaningful use incentives among safety net health systems (a health system or hospital providing asignificant level of care to low-income, uninsured, and vulnerable populations), it is important to understand the readiness and willingness of patients and caregivers in safety net settings to access their personal health records online. Objective: To explore patient and caregiver perspectives on online patient portal use before its implementation at San Francisco General Hospital, a safety net hospital. Methods: We conducted 16 in-depth interviews with chronic disease patients and caregivers who expressed interest in using the Internet to manage their health. Discussions focused on health care experiences, technology use, and interest in using an online portal to manage health tasks. We used open coding to categorize all the barriers and facilitators to portal use, followed by a second round of coding that compared the categories to previously published findings. In secondary analyses, we also examined specific barriers among 2 subgroups: those with limited health literacy and caregivers. Results: We interviewed 11 patients and 5 caregivers. Patients were predominantly male (82\%, 9/11) and African American (45\%, 5/11). All patients had been diagnosed with diabetes and the majority had limited health literacy (73\%, 8/11). The majority of caregivers were female (80\%, 4/5), African American (60\%, 3/5), caregivers of individuals with diabetes (60\%, 3/5), and had adequate health literacy (60\%, 3/5). A total of 88\% (14/16) of participants reported interest in using the portal after viewing a prototype. Major perceived barriers included security concerns, lack of technical skills/interest, and preference for in-person communication. Facilitators to portal use included convenience, health monitoring, and improvements in patient-provider communication. Participants with limited health literacy discussed more fundamental barriers to portal use, including challenges with reading and typing, personal experience with online security breaches/viruses, and distrust of potential security measures. Caregivers expressed high interest in portal use to support their roles in interpreting health information, advocating for quality care, and managing health behaviors and medical care. Conclusions: Despite concerns about security, difficulty understanding medical information, and satisfaction with current communication processes, respondents generally expressed enthusiasm about portal use. Our findings suggest a strong need for training and support to assist vulnerable patients with portal registration and use, particularly those with limited health literacy. Efforts to encourage portal use among vulnerable patients should directly address health literacy and security/privacy issues and support access for caregivers. ", doi="10.2196/jmir.4847", url="http://www.jmir.org/2015/12/e275/", url="http://www.ncbi.nlm.nih.gov/pubmed/26681155" } @Article{info:doi/10.2196/jmir.4734, author="Lau, YS Annie and Arguel, Ama{\"e}l and Dennis, Sarah and Liaw, Siaw-Teng and Coiera, Enrico", title="``Why Didn't it Work?'' Lessons From a Randomized Controlled Trial of a Web-based Personally Controlled Health Management System for Adults with Asthma", journal="J Med Internet Res", year="2015", month="Dec", day="15", volume="17", number="12", pages="e283", keywords="asthma", keywords="self-management", keywords="personal health record", keywords="personally controlled health management system", keywords="eHealth", keywords="Internet", keywords="intervention", keywords="adult", abstract="Background: Personally controlled health management systems (PCHMS), which may include a personal health record (PHR), health management tools, and information resources, have been advocated as a next-generation technology to improve health behaviors and outcomes. There have been successful trials of PCHMS in various health settings. However, there is mixed evidence for whether consumers will use these systems over the long term and whether they ultimately lead to improved health outcomes and behaviors. Objective: The aim was to test whether use of a PCHMS by consumers can increase the uptake or updating of a written asthma action plan (AAP) among adults with asthma. Methods: A 12-month parallel 2-group randomized controlled trial was conducted. Participants living with asthma were recruited nationally in Australia between April and August 2013, and randomized 1:1 to either the PCHMS group or control group (online static educational content). The primary outcome measure was possession of an up-to-date written AAP poststudy. Secondary measures included (1) utilizing the AAP; (2) planned or unplanned visits to a health care professional for asthma-related concerns; (3) severe asthma exacerbation, inadequately controlled asthma, or worsening of asthma that required a change in treatment; and (4) number of days lost from work or study due to asthma. Ancillary analyses examined reasons for adoption or nonadoption of the intervention. Outcome measures were collected by online questionnaire prestudy, monthly, and poststudy. Results: A total of 330 eligible participants were randomized into 1 of 2 arms (intervention: n=154; control: n=176). Access to the PCHMS was not associated with a significant difference in any of the primary or secondary outcomes. Most participants (80.5\%, 124/154) did not access the intervention or accessed it only once. Conclusions: Despite the intervention being effective in other preventive care settings, system use was negligible and outcome changes were not seen as a result. Consumers must perceive the need for assistance with a task and assign priority to the task supported by the eHealth intervention. Additionally, the cost of adopting the intervention (eg, additional effort, time spent learning the new system) must be lower than the benefit. Otherwise, there is high risk consumers will not adopt the eHealth intervention. Trial Registration: Australian New Zealand Clinical Trials Registry (ANZCTR): ACTRN12612000716864; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=362714 (Archived by WebCite? at http://www.webcitation.org/6dMV6hg4A) ", doi="10.2196/jmir.4734", url="http://www.jmir.org/2015/12/e283/", url="http://www.ncbi.nlm.nih.gov/pubmed/26678294" } @Article{info:doi/10.2196/jmir.5152, author="Haun, N. Jolie and Patel, R. Nitin and Lind, D. Jason and Antinori, Nicole", title="Large-Scale Survey Findings Inform Patients' Experiences in Using Secure Messaging to Engage in Patient-Provider Communication and Self-Care Management: A Quantitative Assessment", journal="J Med Internet Res", year="2015", month="Dec", day="21", volume="17", number="12", pages="e282", keywords="cross-sectional survey", keywords="email", keywords="Internet communication tools", keywords="veterans", abstract="Background: Secure email messaging is part of a national transformation initiative in the United States to promote new models of care that support enhanced patient-provider communication. To date, only a limited number of large-scale studies have evaluated users' experiences in using secure email messaging. Objective: To quantitatively assess veteran patients' experiences in using secure email messaging in a large patient sample. Methods: A cross-sectional mail-delivered paper-and-pencil survey study was conducted with a sample of respondents identified as registered for the Veteran Health Administrations' Web-based patient portal (My HealtheVet) and opted to use secure messaging. The survey collected demographic data, assessed computer and health literacy, and secure messaging use. Analyses conducted on survey data include frequencies and proportions, chi-square tests, and one-way analysis of variance. Results: The majority of respondents (N=819) reported using secure messaging 6 months or longer (n=499, 60.9\%). They reported secure messaging to be helpful for completing medication refills (n=546, 66.7\%), managing appointments (n=343, 41.9\%), looking up test results (n=350, 42.7\%), and asking health-related questions (n=340, 41.5\%). Notably, some respondents reported using secure messaging to address sensitive health topics (n=67, 8.2\%). Survey responses indicated that younger age (P=.039) and higher levels of education (P=.025) and income (P=.003) were associated with more frequent use of secure messaging. Females were more likely to report using secure messaging more often, compared with their male counterparts (P=.098). Minorities were more likely to report using secure messaging more often, at least once a month, compared with nonminorities (P=.086). Individuals with higher levels of health literacy reported more frequent use of secure messaging (P=.007), greater satisfaction (P=.002), and indicated that secure messaging is a useful (P=.002) and easy-to-use (P?.001) communication tool, compared with individuals with lower reported health literacy. Many respondents (n=328, 40.0\%) reported that they would like to receive education and/or felt other veterans would benefit from education on how to access and use the electronic patient portal and secure messaging (n=652, 79.6\%). Conclusions: Survey findings validated qualitative findings found in previous research, such that veterans perceive secure email messaging as a useful tool for communicating with health care teams. To maximize sustained utilization of secure email messaging, marketing, education, skill building, and system modifications are needed. These findings can inform ongoing efforts to promote the sustained use of this electronic tool to support for patient-provider communication. ", doi="10.2196/jmir.5152", url="http://www.jmir.org/2015/12/e282/", url="http://www.ncbi.nlm.nih.gov/pubmed/26690761" } @Article{info:doi/10.2196/jmir.4705, author="Carron-Arthur, Bradley and Ali, Kathina and Cunningham, Alastair John and Griffiths, Margaret Kathleen", title="From Help-Seekers to Influential Users: A Systematic Review of Participation Styles in Online Health Communities", journal="J Med Internet Res", year="2015", month="Dec", day="01", volume="17", number="12", pages="e271", keywords="online health community", keywords="participation style", keywords="social network", keywords="participation inequality", keywords="systematic review", abstract="Background: Understanding how people participate in and contribute to online health communities (OHCs) is useful knowledge in multiple domains. It is helpful for community managers in developing strategies for building community, for organizations in disseminating information about health interventions, and for researchers in understanding the social dynamics of peer support. Objective: We sought to determine if any patterns were apparent in the nature of user participation across online health communities. Methods: The current study involved a systematic review of all studies that have investigated the nature of participation in an online health community and have provided a quantifiable method for categorizing a person based on their participation style. A systematic search yielded 20 papers. Results: Participatory styles were classified as either multidimensional (based on multiple metrics) or unidimensional (based on one metric). With respect to the multidimensional category, a total of 41 different participation styles were identified ranging from Influential Users who were leaders on the board to Topic-Focused Responders who focused on a specific topic and tended to respond to rather than initiate posts. However, there was little overlap in participation styles identified both across OHCs for different health conditions and within OHCs for specific health conditions. Five of the 41 styles emerged in more than one study (Hubs, Authorities, Facilitators, Prime Givers, and Discussants), but the remainder were reported in only one study. The focus of the unidimensional studies was on level of engagement and particularly on high-engaged users. Eight different metrics were used to evaluate level of engagement with the greatest focus on frequency of posts. Conclusions: With the exception of high-engaged users based on high post frequency, the current review found little evidence for consistent participatory styles across different health communities. However, this area of research is in its infancy, with most of the studies included in the review being published in the last 2 years. Nevertheless, the review delivers a nomenclature for OHC participation styles and metrics and discusses important methodological issues that will provide a basis for future comparative research in the area. Further studies are required to systematically investigate a range of participatory styles, to investigate their association with different types of online health communities and to determine the contribution of different participatory styles within and across online health communities. ", doi="10.2196/jmir.4705", url="http://www.jmir.org/2015/12/e271/", url="http://www.ncbi.nlm.nih.gov/pubmed/26627369" } @Article{info:doi/10.2196/jmir.4503, author="Brennan, J. David and Lachowsky, J. Nathan and Georgievski, Georgi and Rosser, Simon Brian R. and MacLachlan, Duncan and Murray, James and ", title="Online Outreach Services Among Men Who Use the Internet to Seek Sex With Other Men (MISM) in Ontario, Canada: An Online Survey", journal="J Med Internet Res", year="2015", month="Dec", day="09", volume="17", number="12", pages="e277", keywords="gay men", keywords="HIV prevention", keywords="Internet", keywords="online outreach", keywords="men who have sex with men", keywords="HIV/AIDS", keywords="sexual health", keywords="mobile technology and sexual health", abstract="Background: Men who use the Internet to seek sex with other men (MISM) are increasingly using the Internet to find sexual health information and to seek sexual partners, with some research suggesting HIV transmission is associated with sexual partnering online. Aiming to ``meet men where they are at,'' some AIDS service organizations (ASOs) deliver online outreach services via sociosexual Internet sites and mobile apps. Objective: To investigate MISM's experiences and self-perceived impacts of online outreach. Methods: From December 2013 to January 2014, MISM aged 16 years or older were recruited from Internet sites, mobile apps, and ASOs across Ontario to complete a 15-minute anonymous online questionnaire regarding their experience of online outreach. Demographic factors associated with encountering online outreach were assessed using backward-stepwise multivariable logistic regression (P<.05 was considered significant). Results: Of 1830 MISM who completed the survey, 8.25\% (151/1830) reported direct experience with online outreach services. Encountering online outreach was more likely for Aboriginal versus white MISM, MISM from Toronto compared with MISM from either Eastern or Southwestern Ontario, and MISM receiving any social assistance. MISM who experienced online outreach felt the service provider was friendly (130/141, 92.2\%), easy to understand (122/140, 87.1\%), helpful (115/139, 82.7\%), prompt (107/143, 74.8\%), and knowledgeable (92/134, 68.7\%); half reported they received a useful referral (49/98, 50\%). Few MISM felt the interaction was annoying (13/141, 9.2\%) or confusing (18/142, 12.7\%). As a result of their last online outreach encounter, MISM reported the following: better understanding of (88/147, 59.9\%) and comfort with (75/147, 51.0\%) their level of sexual risk; increased knowledge (71/147, 48.3\%); and feeling less anxious (51/147, 34.7\%), better connected (46/147, 31.3\%), and more empowered (40/147, 27.2\%). Behaviorally, they reported using condoms more frequently (48/147, 32.7\%) and effectively (35/147, 23.8\%); getting tested for HIV (43/125, 34.4\%) or STIs (42/147, 28.6\%); asking for their partners' HIV statuses (37/147, 25.2\%); and serosorting (26/147, 17.7\%). Few MISM reported no changes (15/147, 10.2\%) and most would use these services again (98/117, 83.8\%). Most MISM who did not use online outreach said they did not need these services (1074/1559, 68.89\%) or were unaware of them (496/1559, 31.82\%). Conclusions: This is the first online outreach evaluation study of MISM in Canada. Online outreach services are a relatively new and underdeveloped area of intervention, but are a promising health promotion strategy to provide service referrals and engage diverse groups of MISM in sexual health education. ", doi="10.2196/jmir.4503", url="http://www.jmir.org/2015/12/e277/", url="http://www.ncbi.nlm.nih.gov/pubmed/26681440" } @Article{info:doi/10.2196/jmir.4345, author="Lee, Kenneth and Hoti, Kreshnik and Hughes, David Jeffery and Emmerton, M. Lynne", title="Consumer Use of ``Dr Google'': A Survey on Health Information-Seeking Behaviors and Navigational Needs", journal="J Med Internet Res", year="2015", month="Dec", day="29", volume="17", number="12", pages="e288", keywords="online", keywords="health information", keywords="health literacy", keywords="patient activation", keywords="information seeking", keywords="information needs", keywords="Internet", keywords="chronic disease", keywords="patients", keywords="survey", abstract="Background: The Internet provides a platform to access health information and support self-management by consumers with chronic health conditions. Despite recognized barriers to accessing Web-based health information, there is a lack of research quantitatively exploring whether consumers report difficulty finding desired health information on the Internet and whether these consumers would like assistance (ie, navigational needs). Understanding navigational needs can provide a basis for interventions guiding consumers to quality Web-based health resources. Objective: We aimed to (1) estimate the proportion of consumers with navigational needs among seekers of Web-based health information with chronic health conditions, (2) describe Web-based health information-seeking behaviors, level of patient activation, and level of eHealth literacy among consumers with navigational needs, and (3) explore variables predicting navigational needs. Methods: A questionnaire was developed based on findings from a qualitative study on Web-based health information-seeking behaviors and navigational needs. This questionnaire also incorporated the eHealth Literacy Scale (eHEALS; a measure of self-perceived eHealth literacy) and PAM-13 (a measure of patient activation). The target population was consumers of Web-based health information with chronic health conditions. We surveyed a sample of 400 Australian adults, with recruitment coordinated by Qualtrics. This sample size was required to estimate the proportion of consumers identified with navigational needs with a precision of 4.9\% either side of the true population value, with 95\% confidence. A subsample was invited to retake the survey after 2 weeks to assess the test-retest reliability of the eHEALS and PAM-13. Results: Of 514 individuals who met our eligibility criteria, 400 (77.8\%) completed the questionnaire and 43 participants completed the retest. Approximately half (51.3\%; 95\% CI 46.4-56.2) of the population was identified with navigational needs. Participants with navigational needs appeared to look for more types of health information on the Internet and from a greater variety of information sources compared to participants without navigational needs. However, participants with navigational needs were significantly less likely to have high levels of eHealth literacy (adjusted odds ratio=0.83, 95\% CI 0.78-0.89, P<.001). Age was also a significant predictor (P=.02). Conclusions: Approximately half of the population of consumers of Web-based health information with chronic health conditions would benefit from support in finding health information on the Internet. Despite the popularity of the Internet as a source of health information, further work is recommended to maximize its potential as a tool to assist self-management in consumers with chronic health conditions. ", doi="10.2196/jmir.4345", url="http://www.jmir.org/2015/12/e288/", url="http://www.ncbi.nlm.nih.gov/pubmed/26715363" } @Article{info:doi/10.2196/jmir.4989, author="Patel, Salma and Cain, Rebecca and Neailey, Kevin and Hooberman, Lucy", title="General Practitioners' Concerns About Online Patient Feedback: Findings From a Descriptive Exploratory Qualitative Study in England", journal="J Med Internet Res", year="2015", month="Dec", day="08", volume="17", number="12", pages="e276", keywords="online reviews", keywords="physician quality", keywords="primary care", keywords="Internet", keywords="quality", keywords="patient empowerment", keywords="quality transparency", keywords="public reporting", keywords="attitude of health personnel", keywords="delivery of health care", keywords="feedback", abstract="Background: The growth in the volume of online patient feedback, including online patient ratings and comments, suggests that patients are embracing the opportunity to review online their experience of receiving health care. Very little is known about health care professionals' attitudes toward online patient feedback and whether health care professionals are comfortable with the public nature of the feedback. Objective: The aim of the overall study was to explore and describe general practitioners' attitudes toward online patient feedback. This paper reports on the findings of one of the aims of the study, which was to explore and understand the concerns that general practitioners (GPs) in England have about online patient feedback. This could then be used to improve online patient feedback platforms and help to increase usage of online patient feedback by GPs and, by extension, their patients. Methods: A descriptive qualitative approach using face-to-face semistructured interviews was used in this study. A topic guide was developed following a literature review and discussions with key stakeholders. GPs (N=20) were recruited from Cambridgeshire, London, and Northwest England through probability and snowball sampling. Interviews were transcribed verbatim and analyzed in NVivo using the framework method, a form of thematic analysis. Results: Most participants in this study had concerns about online patient feedback. They questioned the validity of online patient feedback because of data and user biases and lack of representativeness, the usability of online patient feedback due to the feedback being anonymous, the transparency of online patient feedback because of the risk of false allegations and breaching confidentiality, and the resulting impact of all those factors on them, their professional practice, and their relationship with their patients. Conclusions: The majority of GPs interviewed had reservations and concerns about online patient feedback and questioned its validity and usefulness among other things. Based on the findings from the study, recommendations for online patient feedback website providers in England are given. These include suggestions to make some specific changes to the platform and the need to promote online patient feedback more among both GPs and health care users, which may help to reduce some of the concerns raised by GPs about online patient feedback in this study. ", doi="10.2196/jmir.4989", url="http://www.jmir.org/2015/12/e276/", url="http://www.ncbi.nlm.nih.gov/pubmed/26681299" } @Article{info:doi/10.2196/jmir.4582, author="Kuang, Jinqiu and Argo, Lauren and Stoddard, Greg and Bray, E. Bruce and Zeng-Treitler, Qing", title="Assessing Pictograph Recognition: A Comparison of Crowdsourcing and Traditional Survey Approaches", journal="J Med Internet Res", year="2015", month="Dec", day="17", volume="17", number="12", pages="e281", keywords="crowdsourcing", keywords="patient discharge summaries", keywords="Amazon Mechanical Turk", keywords="pictograph recognition", keywords="cardiovascular", abstract="Background: Compared to traditional methods of participant recruitment, online crowdsourcing platforms provide a fast and low-cost alternative. Amazon Mechanical Turk (MTurk) is a large and well-known crowdsourcing service. It has developed into the leading platform for crowdsourcing recruitment. Objective: To explore the application of online crowdsourcing for health informatics research, specifically the testing of medical pictographs. Methods: A set of pictographs created for cardiovascular hospital discharge instructions was tested for recognition. This set of illustrations (n=486) was first tested through an in-person survey in a hospital setting (n=150) and then using online MTurk participants (n=150). We analyzed these survey results to determine their comparability. Results: Both the demographics and the pictograph recognition rates of online participants were different from those of the in-person participants. In the multivariable linear regression model comparing the 2 groups, the MTurk group scored significantly higher than the hospital sample after adjusting for potential demographic characteristics (adjusted mean difference 0.18, 95\% CI 0.08-0.28, P<.001). The adjusted mean ratings were 2.95 (95\% CI 2.89-3.02) for the in-person hospital sample and 3.14 (95\% CI 3.07-3.20) for the online MTurk sample on a 4-point Likert scale (1=totally incorrect, 4=totally correct). Conclusions: The findings suggest that crowdsourcing is a viable complement to traditional in-person surveys, but it cannot replace them. ", doi="10.2196/jmir.4582", url="http://www.jmir.org/2015/12/e281/", url="http://www.ncbi.nlm.nih.gov/pubmed/26678085" } @Article{info:doi/10.2196/jmir.5144, author="Katsuki, Takeo and Mackey, Ken Tim and Cuomo, Raphael", title="Establishing a Link Between Prescription Drug Abuse and Illicit Online Pharmacies: Analysis of Twitter Data", journal="J Med Internet Res", year="2015", month="Dec", day="16", volume="17", number="12", pages="e280", keywords="social media", keywords="surveillance", keywords="prescription drug abuse", keywords="twitter", keywords="eHealth", keywords="illicit Internet pharmacies", keywords="cyberpharmacies", keywords="infodemiology", keywords="infoveillance", abstract="Background: Youth and adolescent non-medical use of prescription medications (NUPM) has become a national epidemic. However, little is known about the association between promotion of NUPM behavior and access via the popular social media microblogging site, Twitter, which is currently used by a third of all teens. Objective: In order to better assess NUPM behavior online, this study conducts surveillance and analysis of Twitter data to characterize the frequency of NUPM-related tweets and also identifies illegal access to drugs of abuse via online pharmacies. Methods: Tweets were collected over a 2-week period from April 1-14, 2015, by applying NUPM keyword filters for both generic/chemical and street names associated with drugs of abuse using the Twitter public streaming application programming interface. Tweets were then analyzed for relevance to NUPM and whether they promoted illegal online access to prescription drugs using a protocol of content coding and supervised machine learning. Results: A total of 2,417,662 tweets were collected and analyzed for this study. Tweets filtered for generic drugs names comprised 232,108 tweets, including 22,174 unique associated uniform resource locators (URLs), and 2,185,554 tweets (376,304 unique URLs) filtered for street names. Applying an iterative process of manual content coding and supervised machine learning, 81.72\% of the generic and 12.28\% of the street NUPM datasets were predicted as having content relevant to NUPM respectively. By examining hyperlinks associated with NUPM relevant content for the generic Twitter dataset, we discovered that 75.72\% of the tweets with URLs included a hyperlink to an online marketing affiliate that directly linked to an illicit online pharmacy advertising the sale of Valium without a prescription. Conclusions: This study examined the association between Twitter content, NUPM behavior promotion, and online access to drugs using a broad set of prescription drug keywords. Initial results are concerning, as our study found over 45,000 tweets that directly promoted NUPM by providing a URL that actively marketed the illegal online sale of prescription drugs of abuse. Additional research is needed to further establish the link between Twitter content and NUPM, as well as to help inform future technology-based tools, online health promotion activities, and public policy to combat NUPM online. ", doi="10.2196/jmir.5144", url="http://www.jmir.org/2015/12/e280/", url="http://www.ncbi.nlm.nih.gov/pubmed/26677966" } @Article{info:doi/10.2196/jmir.5150, author="Boeldt, L. Debra and Wineinger, E. Nathan and Waalen, Jill and Gollamudi, Shreya and Grossberg, Adam and Steinhubl, R. Steven and McCollister-Slipp, Anna and Rogers, A. Marc and Silvers, Carey and Topol, J. Eric", title="Figure Correction: How Consumers and Physicians View New Medical Technology: Comparative Survey", journal="J Med Internet Res", year="2015", month="Dec", day="18", volume="17", number="12", pages="e284", doi="10.2196/jmir.5150", url="http://www.jmir.org/2015/12/e284/", url="http://www.ncbi.nlm.nih.gov/pubmed/30578207" }