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1.  Developing Internet-Based Health Interventions: A Guide for Public Health Researchers and Practitioners 
Background
Researchers and practitioners interested in developing online health interventions most often rely on Web-based and print resources to guide them through the process of online intervention development. Although useful for understanding many aspects of best practices for website development, missing from these resources are concrete examples of experiences in online intervention development for health apps from the perspective of those conducting online health interventions.
Objective
This study aims to serve as a series of case studies in the development of online health interventions to provide insights for researchers and practitioners who are considering technology-based interventional or programmatic approaches.
Methods
A convenience sample of six study coordinators and five principal investigators at a large, US-based land grant university were interviewed about the process of developing online interventions in the areas of alcohol policy, adolescent health, medication adherence, and human immunodeficiency virus prevention in transgender persons and in men who have sex with men. Participants were asked questions that broadly addressed each of the four phases of the User-Centered Design Process Map from the US Department of Health and Human Services' Research-Based Web Design & Usability Guidelines. Interviews were audio recorded and transcribed. Qualitative codes were developed using line-by-line open coding for all transcripts, and all transcripts were coded independently by at least 2 authors. Differences among coders were resolved with discussion.
Results
We identified the following seven themes: (1) hire a strong (or at least the right) research team, (2) take time to plan before beginning the design process, (3) recognize that vendors and researchers have differing values, objectives, and language, (4) develop a detailed contract, (5) document all decisions and development activities, (6) use a content management system, and (7) allow extra time for testing and debugging your intervention. Each of these areas is discussed in detail, with supporting quotations from principal investigators and study coordinators.
Conclusions
The values held by members of each participating organization involved in the development of the online intervention or program, as well as the objectives that are trying to be met with the website, must be considered. These defined values and objectives should prompt an open and explicit discussion about the scope of work, budget, and other needs from the perspectives of each organization. Because of the complexity of developing online interventions, researchers and practitioners should become familiar with the process and how it may differ from the development and implementation of in-person interventions or programs. To assist with this, the intervention team should consider expanding the team to include experts in computer science or learning technologies, as well as taking advantage of institutional resources that will be needed for successful completion of the project. Finally, we describe the tradeoff between funds available for online intervention or program development and the complexity of the project.
doi:10.2196/jmir.3770
PMCID: PMC4319079  PMID: 25650702
Internet; public health; intervention; development
2.  Patient-Reported Outcomes and Therapeutic Affordances of Social Media: Findings From a Global Online Survey of People With Chronic Pain 
Background
Patient-reported outcomes (PROs) from social media use in chronic disease management continue to emerge. While many published articles suggest the potential for social media is positive, there is a lack of robust examination into mediating mechanisms that might help explain social media’s therapeutic value. This study presents findings from a global online survey of people with chronic pain (PWCP) to better understand how they use social media as part of self-management.
Objective
Our aim is to improve understanding of the various health outcomes reported by PWCP by paying close attention to therapeutic affordances of social media. We wish to examine if demographics of participants underpin health outcomes and whether the concept of therapeutic affordances explains links between social media use and PROs. The goal is for this to help tailor future recommendations for use of social media to meet individuals’ health needs and improve clinical practice of social media use.
Methods
A total of 231 PWCP took part in a global online survey investigating PROs from social media use. Recruited through various chronic disease entities and social networks, participants provided information on demographics, health/pain status, social media use, therapeutic affordances, and PROs from use. Quantitative analysis was performed on the data using descriptive statistics, cross-tabulation, and cluster analysis.
Results
The total dataset represented 218 completed surveys. The majority of participants were university educated (67.0%, 146/218) and female (83.9%, 183/218). More than half (58.7%, 128/218) were married/partnered and not working for pay (75.9%, 88/116 of these due to ill health). Fibromyalgia (46.6%, 55/118) and arthritis (27.1%, 32/118) were the most commonly reported conditions causing pain. Participants showed a clear affinity for social network site use (90.0%, 189/210), followed by discussion forums and blogs. PROs were consistent, suggesting that social media positively impact psychological, social, and cognitive health. Analysis also highlighted two strong correlations linking platform used and health outcomes (particularly psychological, social, and cognitive) to (1) the narrative affordance of social media and (2) frequency of use of the platforms.
Conclusions
Results did not uncover definitive demographics or characteristics of PWCP for which health outcomes are impacted. However, findings corroborate literature within this domain suggesting that there is a typical profile of people who use social media for health and that social media are more suited to particular health outcomes. Exploration of the relationship between social media’s therapeutic affordances and health outcomes, in particular the narration affordance, warrants further attention by patients and clinicians.
doi:10.2196/jmir.3915
PMCID: PMC4319091  PMID: 25616273
social media; chronic disease; chronic pain; therapeutic affordances; patient-reported outcomes
3.  Virtual Patients on the Semantic Web: A Proof-of-Application Study 
Background
Virtual patients are interactive computer simulations that are increasingly used as learning activities in modern health care education, especially in teaching clinical decision making. A key challenge is how to retrieve and repurpose virtual patients as unique types of educational resources between different platforms because of the lack of standardized content-retrieving and repurposing mechanisms. Semantic Web technologies provide the capability, through structured information, for easy retrieval, reuse, repurposing, and exchange of virtual patients between different systems.
Objective
An attempt to address this challenge has been made through the mEducator Best Practice Network, which provisioned frameworks for the discovery, retrieval, sharing, and reuse of medical educational resources. We have extended the OpenLabyrinth virtual patient authoring and deployment platform to facilitate the repurposing and retrieval of existing virtual patient material.
Methods
A standalone Web distribution and Web interface, which contains an extension for the OpenLabyrinth virtual patient authoring system, was implemented. This extension was designed to semantically annotate virtual patients to facilitate intelligent searches, complex queries, and easy exchange between institutions. The OpenLabyrinth extension enables OpenLabyrinth authors to integrate and share virtual patient case metadata within the mEducator3.0 network. Evaluation included 3 successive steps: (1) expert reviews; (2) evaluation of the ability of health care professionals and medical students to create, share, and exchange virtual patients through specific scenarios in extended OpenLabyrinth (OLabX); and (3) evaluation of the repurposed learning objects that emerged from the procedure.
Results
We evaluated 30 repurposed virtual patient cases. The evaluation, with a total of 98 participants, demonstrated the system’s main strength: the core repurposing capacity. The extensive metadata schema presentation facilitated user exploration and filtering of resources. Usability weaknesses were primarily related to standard computer applications’ ease of use provisions. Most evaluators provided positive feedback regarding educational experiences on both content and system usability. Evaluation results replicated across several independent evaluation events.
Conclusions
The OpenLabyrinth extension, as part of the semantic mEducator3.0 approach, is a virtual patient sharing approach that builds on a collection of Semantic Web services and federates existing sources of clinical and educational data. It is an effective sharing tool for virtual patients and has been merged into the next version of the app (OpenLabyrinth 3.3). Such tool extensions may enhance the medical education arsenal with capacities of creating simulation/game-based learning episodes, massive open online courses, curricular transformations, and a future robust infrastructure for enabling mobile learning.
doi:10.2196/jmir.3933
PMCID: PMC4319094  PMID: 25616272
semantics; medical education; problem-based learning; data sharing; patient simulation; educational assessment
4.  Exploring How the Tobacco Industry Presents and Promotes Itself in Social Media 
Background
The commercial potential of social media is utilized by tobacco manufacturers and vendors for tobacco promotion online. However, the prevalence and promotional strategies of pro-tobacco content in social media are still not widely understood.
Objective
The goal of this study was to reveal what is presented by the tobacco industry, and how it promotes itself, on social media sites.
Methods
The top 70 popular cigarette brands are divided into two groups according to their retail prices: group H (brands with high retail prices) and group L (brands with low retail prices). Three comprehensive searches were conducted on Facebook, Wikipedia, and YouTube respectively using the top 70 popular cigarette brands as keywords. We identified tobacco-related content including history and culture, product features, health warnings, home page of cigarette brands, and Web-based tobacco shops. Furthermore, we examined the promotional strategies utilized in social media.
Results
According to the data collected from March 3, 2014 to March 10, 2014, 43 of the 70 representative cigarette brands had created 238 Facebook fan pages, 46 cigarette brands were identified in Wikipedia, and there were over 120,000 pro-tobacco videos on YouTube, associated with 61 cigarette brands. The main content presented on the three social media websites differs significantly. Wikipedia focuses on history and culture (67%, 32/48; P<.001). Facebook mainly covers history and culture (37%, 16/43; P<.001) and major products (35%, 15/43), while YouTube focuses on the features of major tobacco products (79%, 48/61; P=.04) and information about Web-based shops (49%, 30/61; P=.004). Concerning the content presented by groups H and L, there is no significant difference between the two groups. With regard to the promotional strategies used, sales promotions exist extensively in social media. Sales promotion is more prevalent on YouTube than on the other two sites (64%, 39/61 vs 35%, 15/43; P=.004). Generally, the sale promotions of higher-cost brands in social media are more prevalent than those of lower-cost brands (55%, 16/29 vs 7%, 1/14; P<.001 for Facebook; 78%, 28/36 vs 44%, 11/25; P=.005 for YouTube).
Conclusions
The prevalence of cigarette brands in social media allows more pro-tobacco information to be accessed by online users. This dilemma indicates that corresponding regulations should be established to prevent tobacco promotion in social media.
doi:10.2196/jmir.3665
PMCID: PMC4319084  PMID: 25608524
cigarette brands; promotional strategy; social media; tobacco control; tobacco promotion
5.  Validity of Electronic Diet Recording Nutrient Estimates Compared to Dietitian Analysis of Diet Records: Randomized Controlled Trial 
Background
Dietary intake assessment with diet records (DR) is a standard research and practice tool in nutrition. Manual entry and analysis of DR is time-consuming and expensive. New electronic tools for diet entry by clients and research participants may reduce the cost and effort of nutrient intake estimation.
Objective
To determine the validity of electronic diet recording, we compared responses to 3-day DR kept by Tap & Track software for the Apple iPod Touch and records kept on the Nutrihand website to DR coded and analyzed by a research dietitian into a customized US Department of Agriculture (USDA) nutrient analysis program, entitled GRAND (Grand Forks Research Analysis of Nutrient Data).
Methods
Adult participants (n=19) enrolled in a crossover-designed clinical trial. During each of two washout periods, participants kept a written 3-day DR. In addition, they were randomly assigned to enter their DR in a Web-based dietary analysis program (Nutrihand) or a handheld electronic device (Tap & Track). They completed an additional 3-day DR and the alternate electronic diet recording methods during the second washout. Entries resulted in 228 daily diet records or 12 for each of 19 participants. Means of nutrient intake were calculated for each method. Concordance of the intake estimates were determined by Bland-Altman plots. Coefficients of determination (R 2) were calculated for each comparison to assess the strength of the linear relationship between methods.
Results
No significant differences were observed between the mean nutrient values for energy, carbohydrate, protein, fat, saturated fatty acids, total fiber, or sodium between the recorded DR analyzed in GRAND and either Nutrihand or Tap & Track, or for total sugars comparing GRAND and Tap & Track. Reported values for total sugars were significantly reduced (P<.05) comparing Nutrihand to GRAND. Coefficients of determination (R 2) for Nutrihand and Tap & Track compared to DR entries into GRAND, respectively, were energy .56, .01; carbohydrate .58, .08; total fiber .65, .37; sugar .78, .41; protein .44, .03; fat .36, .03; saturated fatty acids .23, .03; sodium .20, .00; and for Nutrihand only for cholesterol .88; vitamin A .02; vitamin C .37; calcium .05; and iron .77. Bland-Altman analysis demonstrates high variability in individual responses for both electronic capture programs with higher 95% limits of agreement for dietary intake recorded on Tap & Track.
Conclusions
In comparison to dietitian-entered 3-day DR, electronic methods resulted in no significant difference in mean nutrient estimates but exhibited larger variability, particularly the Tap & Track program. However, electronic DR provided mean estimates of energy, macronutrients, and some micronutrients, which approximated those of the dietitian-analyzed DR and may be appropriate for dietary monitoring of groups. Electronic diet assessment methods have the potential to reduce the cost and burden of DR analysis for nutrition research and clinical practice.
Trial Registration
Clinicaltrials.gov NCT01183520; http://clinicaltrials.gov/ct2/show/NCT01183520 (Archived by WebCite at http://www.webcitation.org/6VSdYznKX).
doi:10.2196/jmir.3744
PMCID: PMC4319087  PMID: 25604640
diet records; nutrition assessment; electronic data
6.  Earned Media and Public Engagement With CDC’s "Tips From Former Smokers" Campaign: An Analysis of Online News and Blog Coverage 
Background
In March 2012, the US Centers for Disease Control and Prevention (CDC) launched the first-ever paid national tobacco education campaign. At a cost of US $54 million, “Tips from Former Smokers” (Tips) ran for 3 months across multiple media, depicting the suffering experienced by smokers and their families in graphic detail. The potential impact and reach of the Tips campaign was not limited to that achieved through paid media placements. It was also potentially extended through “earned media”, including news and blog coverage of the campaign. Such coverage can shape public understanding of and facilitate public engagement with key health issues.
Objective
To better understand the contribution of earned media to the public’s engagement with health issues in the current news media environment, we examined the online “earned media” and public engagement generated by one national public health campaign.
Methods
We constructed a purposive sample of online media coverage of the CDC’s 2012 Tips from Former Smokers television campaign, focusing on 14 influential and politically diverse US news outlets and policy-focused blogs. We identified relevant content by combining campaign and website-specific keywords for 4 months around the campaign release. Each story was coded for content, inclusion of multimedia, and measures of audience engagement.
Results
The search yielded 36 stories mentioning Tips, of which 27 were focused on the campaign. Story content between pieces was strikingly similar, with most stories highlighting the same points about the campaign’s content, cost, and potential impact. We saw notable evidence of audience engagement; stories focused on Tips generated 9547 comments, 8891 Facebook “likes”, 1027 tweets, and 505 story URL shares on Facebook. Audience engagement varied by story and site, as did the valence and relevance of associated audience comments. Comments were most oppositional on CNN and most supportive on Yahoo. Comment coding revealed approximately equal levels of opposition and support overall. We identified four common arguments among oppositional comments: government intrusion on personal behaviors, problematic allocation of governmental spending, questionable science, and challenges regarding campaign efficacy. Supportive comments tended to convey personal stories and emotions.
Conclusions
The Tips campaign received limited coverage on either online news or blog sources, but the limited number of stories generated engagement among online audiences. In addition to the content and volume of blog and news coverage, audience comments and websites’ mechanisms for sharing stories via social media are likely to determine the influence of online earned media. In order to facilitate meaningful evaluation of public health campaigns within the rapidly advancing media environment, there is a need for the public health community to build consensus regarding collection and assessment of engagement data.
doi:10.2196/jmir.3645
PMCID: PMC4319092  PMID: 25604520
mass media; tobacco; health communication
7.  Short- and Medium-Term Efficacy of a Web-Based Computer-Tailored Nutrition Education Intervention for Adults Including Cognitive and Environmental Feedback: Randomized Controlled Trial 
Background
Web-based, computer-tailored nutrition education interventions can be effective in modifying self-reported dietary behaviors. Traditional computer-tailored programs primarily targeted individual cognitions (knowledge, awareness, attitude, self-efficacy). Tailoring on additional variables such as self-regulation processes and environmental-level factors (the home food environment arrangement and perception of availability and prices of healthy food products in supermarkets) may improve efficacy and effect sizes (ES) of Web-based computer-tailored nutrition education interventions.
Objective
This study evaluated the short- and medium-term efficacy and educational differences in efficacy of a cognitive and environmental feedback version of a Web-based computer-tailored nutrition education intervention on self-reported fruit, vegetable, high-energy snack, and saturated fat intake compared to generic nutrition information in the total sample and among participants who did not comply with dietary guidelines (the risk groups).
Methods
A randomized controlled trial was conducted with a basic (tailored intervention targeting individual cognition and self-regulation processes; n=456), plus (basic intervention additionally targeting environmental-level factors; n=459), and control (generic nutrition information; n=434) group. Participants were recruited from the general population and randomly assigned to a study group. Self-reported fruit, vegetable, high-energy snack, and saturated fat intake were assessed at baseline and at 1- (T1) and 4-months (T2) postintervention using online questionnaires. Linear mixed model analyses examined group differences in change over time. Educational differences were examined with group×time×education interaction terms.
Results
In the total sample, the basic (T1: ES=–0.30; T2: ES=–0.18) and plus intervention groups (T1: ES=–0.29; T2: ES=–0.27) had larger decreases in high-energy snack intake than the control group. The basic version resulted in a larger decrease in saturated fat intake than the control intervention (T1: ES=–0.19; T2: ES=–0.17). In the risk groups, the basic version caused larger decreases in fat (T1: ES=–0.28; T2: ES=–0.28) and high-energy snack intake (T1: ES=–0.34; T2: ES=–0.20) than the control intervention. The plus version resulted in a larger increase in fruit (T1: ES=0.25; T2: ES=0.37) and a larger decrease in high-energy snack intake (T1: ES=–0.38; T2: ES=–0.32) than the control intervention. For high-energy snack intake, educational differences were found. Stratified analyses showed that the plus version was most effective for high-educated participants.
Conclusions
Both intervention versions were more effective in improving some of the self-reported dietary behaviors than generic nutrition information, especially in the risk groups, among both higher- and lower-educated participants. For fruit intake, only the plus version was more effective than providing generic nutrition information. Although feasible, incorporating environmental-level information is time-consuming. Therefore, the basic version may be more feasible for further implementation, although inclusion of feedback on the arrangement of the home food environment and on availability and prices may be considered for fruit and, for high-educated people, for high-energy snack intake.
Trial Registration
Netherlands Trial Registry NTR3396; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=3396 (Archived by WebCite at http://www.webcitation.org/6VNZbdL6w).
doi:10.2196/jmir.3837
PMCID: PMC4319071  PMID: 25599828
cognitive feedback; environmental feedback; self-regulation; computer tailoring; nutrition education; fruit consumption; vegetable consumption; fat consumption; snack consumption
8.  Enhancing Web-Based Mindfulness Training for Mental Health Promotion With the Health Action Process Approach: Randomized Controlled Trial 
Background
With increasing evidence demonstrating the effectiveness of Web-based interventions and mindfulness-based training in improving health, delivering mindfulness training online is an attractive proposition.
Objective
The aim of this study was to evaluate the efficacy of two Internet-based interventions (basic mindfulness and Health Action Process Approach enhanced mindfulness) with waitlist control. Health Action Process Approach (HAPA) principles were used to enhance participants’ efficacy and planning.
Methods
Participants were recruited online and offline among local universities; 321 university students and staff were randomly assigned to three conditions. The basic and HAPA-enhanced groups completed the 8-week fully automated mindfulness training online. All participants (including control) were asked to complete an online questionnaire pre-program, post-program, and at 3-month follow-up.
Results
Significant group by time interaction effect was found. The HAPA-enhanced group showed significantly higher levels of mindfulness from pre-intervention to post-intervention, and such improvement was sustained at follow-up. Both the basic and HAPA-enhanced mindfulness groups showed better mental well-being from pre-intervention to post-intervention, and improvement was sustained at 3-month follow-up.
Conclusions
Online mindfulness training can improve mental health. An online platform is a viable medium to implement and disseminate evidence-based interventions and is a highly scalable approach to reach the general public.
Trial Registration
Chinese Clinical Trial Registry (ChiCTR): ChiCTR-TRC-12002954; http://www.chictr.org/en/proj/show.aspx?proj=3904 (Archived by WebCite at http://www.webcitation.org/6VCdG09pA).
doi:10.2196/jmir.3746
PMCID: PMC4319090  PMID: 25599904
Internet-based intervention; online intervention; mindfulness; Health Action Process Approach (HAPA); mental health promotion
9.  A Mobile App to Aid Smoking Cessation: Preliminary Evaluation of SmokeFree28 
Background
Little is known about the effectiveness of mobile apps in aiding smoking cessation or their validity for automated collection of data on smoking cessation outcomes.
Objective
We conducted a preliminary evaluation of SF28 (SF28 is the name of the app, short for SmokeFree28)—an app aimed at helping smokers to be smoke-free for 28 days.
Methods
Data on sociodemographic characteristics, smoking history, number of logins, and abstinence at each login were uploaded to a server from SF28 between August 2012 and August 2013. Users were included if they were aged 16 years or over, smoked cigarettes at the time of registration, had set a quit date, and used the app at least once on or after their quit date. Their characteristics were compared with data from a representative sample of smokers trying to stop smoking in England. The percentage of users recording 28 days of abstinence was compared with a value of 15% estimated for unaided quitting. Correlations were assessed between recorded abstinence for 28 days and well-established abstinence predictors.
Results
A total of 1170 users met the inclusion criteria. Compared with smokers trying to quit in England, they had higher consumption, and were younger, more likely to be female, and had a non-manual rather than manual occupation. In total, 18.9% (95% CI 16.7-21.1) were recorded as being abstinent from smoking for 28 days or longer. The mean number of logins was 8.5 (SD 9.0). The proportion recording abstinence for 28 days or longer was higher in users who were older, in a non-manual occupation, and in those using a smoking cessation medication.
Conclusions
The recorded 28-day abstinence rates from the mobile app, SF28, suggest that it may help some smokers to stop smoking. Further evaluation by means of a randomized trial appears to be warranted.
doi:10.2196/jmir.3479
PMCID: PMC4319069  PMID: 25596170
smoking cessation intervention; mobile; smartphone; apps; PRIME theory
10.  Using Patient Experiences on Dutch Social Media to Supervise Health Care Services: Exploratory Study 
Background
Social media has become mainstream and a growing number of people use it to share health care-related experiences, for example on health care rating sites. These users’ experiences and ratings on social media seem to be associated with quality of care. Therefore, information shared by citizens on social media could be of additional value for supervising the quality and safety of health care services by regulatory bodies, thereby stimulating participation by consumers.
Objective
The objective of the study was to identify the added value of social media for two types of supervision by the Dutch Healthcare Inspectorate (DHI), which is the regulatory body charged with supervising the quality and safety of health care services in the Netherlands. These were (1) supervision in response to incidents reported by individuals, and (2) risk-based supervision.
Methods
We performed an exploratory study in cooperation with the DHI and searched different social media sources such as Twitter, Facebook, and healthcare rating sites to find additional information for these incidents and topics, from five different sectors. Supervision experts determined the added value for each individual result found, making use of pre-developed scales.
Results
Searches in social media resulted in relevant information for six of 40 incidents studied and provided relevant additional information in 72 of 116 cases in risk-based supervision of long-term elderly care.
Conclusions
The results showed that social media could be used to include the patient’s perspective in supervision. However, it appeared that the rating site ZorgkaartNederland was the only source that provided information that was of additional value for the DHI, while other sources such as forums and social networks like Twitter and Facebook did not result in additional information. This information could be of importance for health care inspectorates, particularly for its enforcement by risk-based supervision in care of the elderly. Further research is needed to determine the added value for other health care sectors.
doi:10.2196/jmir.3906
PMCID: PMC4319082  PMID: 25592481
social media; rating sites; patient safety; supervision
11.  An Observational Study of Social and Emotional Support in Smoking Cessation Twitter Accounts: Content Analysis of Tweets 
Background
Smoking continues to be the number one preventable cause of premature death in the United States. While evidence for the effectiveness of smoking cessation interventions has increased rapidly, questions remain on how to effectively disseminate these findings. Twitter, the second largest online social network, provides a natural way of disseminating information. Health communicators can use Twitter to inform smokers, provide social support, and attract them to other interventions. A key challenge for health researchers is how to frame their communications to maximize the engagement of smokers.
Objective
Our aim was to examine current Twitter activity for smoking cessation.
Methods
Active smoking cessation related Twitter accounts (N=18) were identified. Their 50 most recent tweets were content coded using a schema adapted from the Roter Interaction Analysis System (RIAS), a theory-based, validated coding method. Using negative binomial regression, the association of number of followers and frequency of individual tweet content at baseline was assessed. The difference in followership at 6 months (compared to baseline) to the frequency of tweet content was compared using linear regression. Both analyses were adjusted by account type (organizational or not organizational).
Results
The 18 accounts had 60,609 followers at baseline and 68,167 at 6 months. A total of 24% of tweets were socioemotional support (mean 11.8, SD 9.8), 14% (mean 7, SD 8.4) were encouraging/engagement, and 62% (mean 31.2, SD 15.2) were informational. At baseline, higher frequency of socioemotional support and encouraging/engaging tweets was significantly associated with higher number of followers (socioemotional: incident rate ratio [IRR] 1.09, 95% CI 1.02-1.20; encouraging/engaging: IRR 1.06, 95% CI 1.00-1.12). Conversely, higher frequency of informational tweets was significantly associated with lower number of followers (IRR 0.95, 95% CI 0.92-0.98). At 6 months, for every increase by 1 in socioemotional tweets, the change in followership significantly increased by 43.94 (P=.027); the association was slightly attenuated after adjusting by account type and was not significant (P=.064).
Conclusions
Smoking cessation activity does exist on Twitter. Preliminary findings suggest that certain content strategies can be used to encourage followership, and this needs to be further investigated.
doi:10.2196/jmir.3768
PMCID: PMC4319088  PMID: 25589009
smoking cessation; Twitter; Internet; social network
12.  Patient Perspectives on Online Health Information and Communication With Doctors: A Qualitative Study of Patients 50 Years Old and Over 
Background
As health care systems around the world shift toward models that emphasize self-care management, there is increasing pressure for patients to obtain health information online. It is critical that patients are able to identify potential problems with using the Internet to diagnose and treat a health issue and that they feel comfortable communicating with their doctor about the health information they acquire from the Internet.
Objective
Our aim was to examine patient-identified (1) problems with using the Internet to identify and treat a health issue, (2) barriers to communication with a doctor about online health information seeking, and (3) facilitators of communication with a doctor about patient searches for health information on the Internet.
Methods
For this qualitative exploratory study, semistructured interviews were conducted with a sample of 56 adults age 50 years old and over. General concerns regarding use of the Internet to diagnose and treat a health issue were examined separately for participants based on whether they had ever discussed health information obtained through the Internet with a doctor. Discussions about barriers to and facilitators of communication about patient searches for health information on the Internet with a doctor were analyzed using thematic analysis.
Results
Six higher-level general concerns emerged: (1) limitations in own ability, (2) credibility/limitations of online information, (3) anxiety, (4) time consumption, (5) conflict, and (6) non-physical harm. The most prevalent concern raised by participants who communicated with a doctor about their online health information seeking related to the credibility or limitations in online information. Participants who had never communicated with a doctor about their online health information seeking most commonly reported concerns about non-physical harm. Four barriers to communication emerged: (1) concerns about embarrassment, (2) concerns that the doctor doesn’t want to hear about it, (3) belief that there is no need to bring it up, and (4) forgetting to bring it up. Facilitators of communication included: (1) having a family member present at doctor visits, (2) doctor-initiated inquiries, and (3) encountering an advertisement that suggested talking with a doctor.
Conclusions
Overall, participants displayed awareness of potential problems related to online health information seeking. Findings from this study point to a set of barriers as well as facilitators of communication about online health information seeking between patients and doctors. This study highlights the need for enhanced patient communication skills, eHealth literacy assessments that are accompanied by targeted resources pointing individuals to high-quality credible online health information, and the need to remind patients of the importance of consulting a medical professional when they use online health resources to diagnose and treat a health issue.
doi:10.2196/jmir.3588
PMCID: PMC4319073  PMID: 25586865
health communication; Internet; online health information seeking; barriers to patient-doctor communication; adults 50 years old and over; qualitative research
13.  The Effectiveness of Health Animations in Audiences With Different Health Literacy Levels: An Experimental Study 
Background
Processing Web-based health information can be difficult, especially for people with low health literacy. Presenting health information in an audiovisual format, such as animation, is expected to improve understanding among low health literate audiences.
Objective
The aim of this paper is to investigate what features of spoken health animations improve information recall and attitudes and whether there are differences between health literacy groups.
Methods
We conducted an online experiment among 231 participants aged 55 years or older with either low or high health literacy. A 2 (spoken vs written text) x 2 (illustration vs animation) design was used. Participants were randomly exposed to one of the four experimental messages, all providing the same information on colorectal cancer screening.
Results
The results showed that, among people with low health literacy, spoken messages about colorectal cancer screening improved recall (P=.03) and attitudes (P=.02) compared to written messages. Animations alone did not improve recall, but when combined with spoken text, they significantly improved recall in this group (P=.02). When exposed to spoken animations, people with low health literacy recalled the same amount of information as their high health literate counterparts (P=.12), whereas in all other conditions people with high health literacy recalled more information compared to low health literate individuals. For people with low health literacy, positive attitudes mediated the relationship between spoken text and the intention to have a colorectal cancer screening (b=.12; 95% CI 0.02-0.25).
Conclusions
We conclude that spoken animation is the best way to communicate complex health information to people with low health literacy. This format can even bridge the information processing gap between audiences with low and high health literacy as the recall differences between the two groups are eliminated. As animations do not negatively influence high health literate audiences, it is concluded that information adapted to audiences with low health literacy suits people with high health literacy as well.
doi:10.2196/jmir.3979
PMCID: PMC4319081  PMID: 25586711
health literacy; animation; medical illustration; reading; audiovisual media; cancer screening; colorectal cancer; prevention; memory; attitudes
14.  Evaluations of Dentists on a German Physician Rating Website: An Analysis of the Ratings 
Background
Physician rating websites have been gaining in importance in both practice and research. However, no evidence is available concerning patients’ ratings of dentists on physician rating websites.
Objective
The aim of this study is to present a comprehensive analysis of the ratings of dentists on a German physician rating website over a 2-year period.
Methods
All dentist ratings on a German physician rating website (Jameda) from 2012 and 2013 were analyzed. The available dataset contained 76,456 ratings of 23,902 dentists from 72,758 patients. Additional information included the overall score and subscores for 5 mandatory questions, the medical specialty and gender of the dentists, and the age, gender, and health insurance status of the patients. Statistical analysis was conducted using the median test and the Kendall tau-b test.
Results
During the study period, 44.57% (23,902/53,626) of all dentists in Germany were evaluated on the physician rating website, Jameda. The number of ratings rose from 28,843 in 2012 to 47,613 in 2013, representing an increase of 65.08%. In detail, 45.37% (10,845/23,902) of dentists were rated once, 43.41% (10,376/23,902) between 2 and 5 times, and 11.21% (2681/23,902) more than 6 times (mean 3.16, SD 5.57). Approximately 90% (21,324/23,902, 89.21%) of dentists received a very good or good overall rating, whereas only 3.02% (721/23,902) were rated with the lowest scores. Better ratings were given either by female or older patients, or by those covered by private health insurance. The best-rated specialty was pediatric dentistry; the lowest ratings were given to orthodontists. Finally, dentists were rated slightly lower in 2013 compared to 2012 (P=.01).
Conclusions
The rise in the number of ratings for dentists demonstrates the increasing popularity of physician rating websites and the need for information about health care providers. Future research should assess whether social media, especially Web-based ratings, are suitable in practice for patients and other stakeholders in health care (eg, insurance providers) to reflect the clinical quality of care.
doi:10.2196/jmir.3830
PMCID: PMC4319074  PMID: 25582914
physician rating website; dentist; patient experience; Internet; quality of care
15.  Designing and Evaluating an Interactive Multimedia Web-Based Simulation for Developing Nurses’ Competencies in Acute Nursing Care: Randomized Controlled Trial 
Background
Web-based learning is becoming an increasingly important instructional tool in nursing education. Multimedia advancements offer the potential for creating authentic nursing activities for developing nursing competency in clinical practice.
Objective
This study aims to describe the design, development, and evaluation of an interactive multimedia Web-based simulation for developing nurses’ competencies in acute nursing care.
Methods
Authentic nursing activities were developed in a Web-based simulation using a variety of instructional strategies including animation video, multimedia instructional material, virtual patients, and online quizzes. A randomized controlled study was conducted on 67 registered nurses who were recruited from the general ward units of an acute care tertiary hospital. Following a baseline evaluation of all participants’ clinical performance in a simulated clinical setting, the experimental group received 3 hours of Web-based simulation and completed a survey to evaluate their perceptions of the program. All participants were re-tested for their clinical performances using a validated tool.
Results
The clinical performance posttest scores of the experimental group improved significantly (P<.001) from the pretest scores after the Web-based simulation. In addition, compared to the control group, the experimental group had significantly higher clinical performance posttest scores (P<.001) after controlling the pretest scores. The participants from the experimental group were satisfied with their learning experience and gave positive ratings for the quality of the Web-based simulation. Themes emerging from the comments about the most valuable aspects of the Web-based simulation include relevance to practice, instructional strategies, and fostering problem solving.
Conclusions
Engaging in authentic nursing activities using interactive multimedia Web-based simulation can enhance nurses’ competencies in acute care. Web-based simulations provide a promising educational tool in institutions where large groups of nurses need to be trained in acute nursing care and accessibility to repetitive training is essential for achieving long-term retention of clinical competency.
doi:10.2196/jmir.3853
PMCID: PMC4319078  PMID: 25583029
acute nursing care; authentic learning; clinical competency; deterioration; multimedia; instructional strategies; simulation; Web-based simulation
16.  The Effect of Social Support Features and Gamification on a Web-Based Intervention for Rheumatoid Arthritis Patients: Randomized Controlled Trial 
Background
Rheumatoid arthritis (RA) is chronic systematic disease that affects people during the most productive period of their lives. Web-based health interventions have been effective in many studies; however, there is little evidence and few studies showing the effectiveness of online social support and especially gamification on patients’ behavioral and health outcomes.
Objective
The aim of this study was to look into the effects of a Web-based intervention that included online social support features and gamification on physical activity, health care utilization, medication overuse, empowerment, and RA knowledge of RA patients. The effect of gamification on website use was also investigated.
Methods
We conducted a 5-arm parallel randomized controlled trial for RA patients in Ticino (Italian-speaking part of Switzerland). A total of 157 patients were recruited through brochures left with physicians and were randomly allocated to 1 of 4 experimental conditions with different types of access to online social support and gamification features and a control group that had no access to the website. Data were collected at 3 time points through questionnaires at baseline, posttest 2 months later, and at follow-up after another 2 months. Primary outcomes were physical activity, health care utilization, and medication overuse; secondary outcomes included empowerment and RA knowledge. All outcomes were self-reported. Intention-to-treat analysis was followed and multilevel linear mixed models were used to study the change of outcomes over time.
Results
The best-fit multilevel models (growth curve models) that described the change in the primary outcomes over the course of the intervention included time and empowerment as time-variant predictors. The growth curve analyses of experimental conditions were compared to the control group. Physical activity increased over time for patients having access to social support sections plus gaming (unstandardized beta coefficient [B]=3.39, P=.02). Health care utilization showed a significant decrease for patients accessing social support features (B=–0.41, P=.01) and patients accessing both social support features and gaming (B=–0.33, P=.03). Patients who had access to either social support sections or the gaming experience of the website gained more empowerment (B=2.59, P=.03; B=2.29, P=.05; respectively). Patients who were offered a gamified experience used the website more often than the ones without gaming (t 91=–2.41, P=.02; U=812, P=.02).
Conclusions
The Web-based intervention had a positive impact (more desirable outcomes) on intervention groups compared to the control group. Social support sections on the website decreased health care utilization and medication overuse and increased empowerment. Gamification alone or with social support increased physical activity and empowerment and decreased health care utilization. This study provides evidence demonstrating the potential positive effect of gamification and online social support on health and behavioral outcomes.
Trial Registration
International Standard Randomized Controlled Trial Number (ISRCTN): 57366516; http://www.controlled-trials. com/ISRCTN57366516 (Archived by webcite at http://www.webcitation.org/6PBvvAvvV).
doi:10.2196/jmir.3510
PMCID: PMC4296094  PMID: 25574939
social support; gaming; experimental games; eHealth; rheumatoid arthritis; randomized controlled trial; multilevel analysis; patient empowerment; physical activity; health care utilization
17.  Health Information–Seeking Behavior of Seniors Who Use the Internet: A Survey 
Background
The Internet is viewed as an important source for health information and a medium for patient empowerment. However, little is known about how seniors use the Internet in relation to other sources for health information.
Objective
The aim was to determine which information resources seniors who use the Internet use and trust for health information, which sources are preferred, and which sources are used by seniors for different information needs.
Methods
Questions from published surveys were selected based on their relevance to the study objectives. The Autonomy Preference Index was used to assess information needs and preferences for involvement in health decisions. Invitation to participate in this online survey was sent to the email list of a local senior organization (298 addresses) in the Netherlands.
Results
There were 118 respondents with a median age of 72 years (IQR 67-78 years). Health professionals, pharmacists, and the Internet were the most commonly used and trusted sources of health information. Leaflets, television, newspapers, and health magazines were also important sources. Respondents who reported higher use of the Internet also reported higher use of other sources (P<.001). Use of health professionals, pharmacists, leaflets, telephone, television, and radio were not significantly different; use of all other resources was significantly higher in frequent Internet users. When in need of health information, preferred sources were the Internet (46/105, 43.8%), other sources (eg, magazines 38/105, 36.2%), health professionals (18/105, 17.1%), and no information seeking (3/105, 2.8%). Of the 51/107 respondents who indicated that they had sought health information in the last 12 months, 43 sought it after an appointment, 23 were preparing for an appointment, and 20 were deciding if an appointment was needed. The source used varied by the type of information sought. The Internet was used most often for symptoms (27/42, 64%), prognosis (21/31, 68%), and treatment options (23/41, 62%), whereas health professionals were asked for additional information on medications (20/36, 56%), side effects (17/36, 47%), coping (17/31, 55%), practical care (12/14, 86%), and nutrition/exercise (18/30, 60%).
Conclusions
For these seniors who use the Internet, the Internet was a preferred source of health information. Seniors who report higher use of the Internet also report higher use of other information resources and were also the primary consumers of paper-based resources. Respondents most frequently searched for health information after an appointment rather than to prepare for an appointment. Resources used varied by health topic. Future research should seek to confirm these findings in a general elderly population, investigate how seniors seek and understand information on the Internet, and investigate how to reach seniors who prefer not to use the Internet for health information.
doi:10.2196/jmir.3749
PMCID: PMC4296102  PMID: 25574815
aged; aged, 80 and over; information-seeking behavior; Internet; patient education; empowerment
18.  Characteristics and Help-Seeking Behaviors of Internet Gamblers Based on Most Problematic Mode of Gambling 
Background
Previous studies of problem Internet gamblers have failed to distinguish whether their problem gambling relates to Internet or land-based gambling modes. Therefore, characteristics and help-seeking behaviors of people whose gambling problems relate specifically to Internet gambling are unknown, but could inform the optimal alignment of treatment and support services with the needs and preferences of problem gamblers.
Objective
This study aimed to compare (1) characteristics of problem Internet gamblers and problem land-based gamblers and (2) uptake of different types and modes of help between problem Internet gamblers and problem land-based gamblers. Hypothesis 1 was that problem Internet gamblers are less likely to seek help. Hypothesis 2 was that problem Internet gamblers are more likely to use online modes of help.
Methods
A sample of 620 respondents meeting criteria for problem gambling was drawn from an online survey of 4594 Australian gamblers. Respondents were recruited through advertisements on gambling and gambling help websites, Facebook, and Google. Measures consisted of gambling participation; proportion of gambling on the Internet; most problematic mode of gambling; help seeking from 11 different sources of formal help, informal help, and self-help for gambling problems; psychological distress (Kessler 6); problem gambling severity (Problem Gambling Severity Index, PGSI); and demographics.
Results
Problem Internet gamblers were significantly more likely than problem land-based gamblers to be male (χ2 1=28.3, P<.001, φ=0.21), younger (t 616.33=4.62, P<.001, d=0.37), have lower psychological distress (χ2 1=5.4, P=.02, φ=0.09), and experience problems with sports and race wagering (χ2 4=228.5, P<.001, φ=0.61). Uptake of help was significantly lower among problem Internet compared to problem land-based gamblers (χ2 1=6.9, P<.001, φ=0.11), including from face-to-face services, gambling helplines, online groups, self-exclusion from land-based venues, family or friends, and self-help strategies. Both problem Internet and problem land-based gamblers had similarly low use of online help. However, problem land-based gamblers (37.6%, 126/335) were significantly more likely to have sought land-based formal help compared to problem Internet gamblers (23.5%, 67/285; χ2 1=14.3, P<.001, φ=0.15).
Conclusions
The findings suggest that more targeted and innovative efforts may be needed to increase use of gambling help by problem Internet gamblers. Alternatively, their lower PGSI and K6 scores suggest Internet problem gamblers may have less need for gambling-related help. This is the first known study to classify problem Internet gamblers as those whose problem gambling specifically relates to Internet gambling. Further research is needed to better understand why help-seeking rates are lower among Internet problem gamblers.
doi:10.2196/jmir.3781
PMCID: PMC4296092  PMID: 25567672
gambling; Internet; pathological gambling; treatment
19.  Virtual Intervention to Support Self-Management of Antiretroviral Therapy Among People Living With HIV 
Background
Living with human immunodeficiency virus (HIV) necessitates long-term health care follow-up, particularly with respect to antiretroviral therapy (ART) management. Taking advantage of the enormous possibilities afforded by information and communication technologies (ICT), we developed a virtual nursing intervention (VIH-TAVIE) intended to empower HIV patients to manage their ART and their symptoms optimally. ICT interventions hold great promise across the entire continuum of HIV patient care but further research is needed to properly evaluate their effectiveness.
Objective
The objective of the study was to compare the effectiveness of two types of follow-up—traditional and virtual—in terms of promoting ART adherence among HIV patients.
Methods
A quasi-experimental study was conducted. Participants were 179 HIV patients on ART for at least 6 months, of which 99 were recruited at a site offering virtual follow-up and 80 at another site offering only traditional follow-up. The primary outcome was medication adherence and the secondary outcomes were the following cognitive and affective variables: self-efficacy, attitude toward medication intake, symptom-related discomfort, stress, and social support. These were evaluated by self-administered questionnaire at baseline (T0), and 3 (T3) and 6 months (T6) later.
Results
On average, participants had been living with HIV for 14 years and had been on ART for 11 years. The groups were highly heterogeneous, differing on a number of sociodemographic dimensions: education, income, marital status, employment status, and living arrangements. Adherence at baseline was high, reaching 80% (59/74) in the traditional follow-up group and 84% (81/97) in the virtual follow-up group. A generalized estimating equations (GEE) analysis was run, controlling for sociodemographic characteristics at baseline. A time effect was detected indicating that both groups improved in adherence over time but did not differ in this regard. Improvement at 6 months was significantly greater than at 3 months in both groups. Analysis of variance revealed no significant group-by-time interaction effect on any of the secondary outcomes. A time effect was observed for the two kinds of follow-ups; both groups improved on symptom-related discomfort and social support.
Conclusions
Results showed that both interventions improved adherence to ART. Thus, the two kinds of follow-up can be used to promote treatment adherence among HIV patients on ART.
doi:10.2196/jmir.3264
PMCID: PMC4296100  PMID: 25563775
adherence; antiretroviral therapy, highly active; HIV-infected patients; human immunodeficiency virus; nursing; nursing informatics; Web-based intervention
20.  Development and Assessment of an E-Learning Course on Breast Imaging for Radiographers: A Stratified Randomized Controlled Trial 
Background
Mammography is considered the best imaging technique for breast cancer screening, and the radiographer plays an important role in its performance. Therefore, continuing education is critical to improving the performance of these professionals and thus providing better health care services.
Objective
Our goal was to develop an e-learning course on breast imaging for radiographers, assessing its efficacy, effectiveness, and user satisfaction.
Methods
A stratified randomized controlled trial was performed with radiographers and radiology students who already had mammography training, using pre- and post-knowledge tests, and satisfaction questionnaires. The primary outcome was the improvement in test results (percentage of correct answers), using intention-to-treat and per-protocol analysis.
Results
A total of 54 participants were assigned to the intervention (20 students plus 34 radiographers) with 53 controls (19+34). The intervention was completed by 40 participants (11+29), with 4 (2+2) discontinued interventions, and 10 (7+3) lost to follow-up. Differences in the primary outcome were found between intervention and control: 21 versus 4 percentage points (pp), P<.001. Stratified analysis showed effect in radiographers (23 pp vs 4 pp; P=.004) but was unclear in students (18 pp vs 5 pp; P=.098). Nonetheless, differences in students’ posttest results were found (88% vs 63%; P=.003), which were absent in pretest (63% vs 63%; P=.106). The per-protocol analysis showed a higher effect (26 pp vs 2 pp; P<.001), both in students (25 pp vs 3 pp; P=.004) and radiographers (27 pp vs 2 pp; P<.001). Overall, 85% were satisfied with the course, and 88% considered it successful.
Conclusions
This e-learning course is effective, especially for radiographers, which highlights the need for continuing education.
doi:10.2196/jmir.3344
PMCID: PMC4296101  PMID: 25560547
breast neoplasms; continuing education; distance learning; evaluation studies; mammography
21.  Mobile-Web App to Self-Manage Low Back Pain: Randomized Controlled Trial 
Background
Nonspecific low back pain (NLBP) is the diagnosis for individuals with back pain that has no underlying medical cause (eg, tumor, infection, fracture, herniated disc, spinal stenosis). The American College of Physicians (ACP) and American Pain Society (APS) recommend multidisciplinary treatments for NLBP that lasts more than 4 weeks. This approach, however, is impractical for many physicians to implement, and relatively few providers offer NLBP treatment that meets the joint ACP-APS guidelines.
Objective
This study evaluated the efficacy of a mobile-Web intervention called “FitBack” to help users implement self-tailored strategies to manage and prevent NLBP occurrences.
Methods
A total of 597 adults were recruited, screened, consented, and assessed online at baseline, at 2 months (T2), and at 4 months (T3). After baseline assessments, participants were randomized into three groups: FitBack intervention, alternative care group that received 8 emails urging participants to link to six Internet resources for NLBP, and control group. The FitBack group also received weekly email reminder prompts for 8 weeks plus emails to do assessments. The control group was only contacted to do assessments.
Results
Users of the FitBack program showed greater improvement compared to the control group in every comparison of the critical physical, behavioral, and worksite outcome measures at 4-month follow-up. In addition, users of the FitBack program performed better than the alternative care group on current back pain, behavioral, and worksite outcomes at 4-month follow-up. For example, subjects in the control group were 1.7 times more likely to report current back pain than subjects in the FitBack group; subjects in the alternative care group were 1.6 times more likely to report current back pain at 4-month follow-up. Further, the users of the FitBack program showed greater improvement compared to both the control and alternative care groups at 4-month follow-up on patient activation, constructs of the Theory of Planned Behavior, and attitudes toward pain.
Conclusions
This research demonstrated that a theoretically based stand-alone mobile-Web intervention that tailors content to users’ preferences and interests can be an effective tool in self-management of low back pain. When viewed from the RE-AIM perspective (ie, reach, efficacy/effectiveness, adoption, implementation fidelity, and maintenance), this study supports the notion that there is considerable value in this type of intervention as a potentially cost-effective tool that can reach large numbers of people. The results are promising considering that the FitBack intervention was neither supported by professional caregivers nor integrated within a health promotion campaign, which might have provided additional support for participants. Still, more research is needed on how self-guided mobile-Web interventions will be used over time and to understand factors associated with continuing user engagement.
Trial Registration
Clinicaltrials.gov NCT01950091; http://clinicaltrials.gov/ct2/show/NCT01950091 (Archived by WebCite at http://www.webcitation.org/6TwZucX77).
doi:10.2196/jmir.3130
PMCID: PMC4296097  PMID: 25565416
low back pain; Internet; mobile; app; computers; prevention; self-treatment
22.  Impact of an Online Medical Internet Site on Knowledge and Practice of Health Care Providers: A Mixed Methods Study of the Spinal Cord Injury Rehabilitation Evidence Project 
Background
It is not known whether ongoing access to a broad-based Internet knowledge resource can influence the practice of health care providers. We undertook a study to evaluate the impact of a Web-based knowledge resource on increasing access to evidence and facilitating best practice of health care providers.
Objective
The objective of this study was to evaluate (1) the impact of the Spinal Cord Injury Rehabilitation Evidence (SCIRE) project on access to information for health care providers and researchers and (2) how SCIRE influenced health care providers' management of clients.
Methods
A 4-part mixed methods evaluation was undertaken: (1) monitoring website traffic and utilization using Google Analytics, (2) online survey of users who accessed the SCIRE website, (3) online survey of targeted end-users, that is, rehabilitation health care providers known to work with spinal cord injury (SCI) clients, as well as researchers, and (4) focus groups with health care providers who had previously accessed SCIRE.
Results
The online format allowed the content for a relatively specialized field to have far reach (eg, 26 countries and over 6500 users per month). The website survey and targeted end-user survey confirmed that health care providers, as well as researchers perceived that the website increased their access to SCI evidence. Access to SCIRE not only improved knowledge of SCI evidence but helped inform changes to the health providers’ clinical practice and improved their confidence in treating SCI clients. The SCIRE information directly influenced the health providers’ clinical decision making, in terms of choice of intervention, equipment needs, or assessment tool.
Conclusions
A Web-based knowledge resource may be a relatively inexpensive method to increase access to evidence-based information, increase knowledge of the evidence, inform changes to the health providers’ practice, and influence their clinical decision making.
doi:10.2196/jmir.3453
PMCID: PMC4285726  PMID: 25537167
Internet; e-health; spinal cord injury; rehabilitation; evidence-based practice
23.  Ethical Issues in Using Twitter for Public Health Surveillance and Research: Developing a Taxonomy of Ethical Concepts From the Research Literature 
Background
The rise of social media and microblogging platforms in recent years, in conjunction with the development of techniques for the processing and analysis of “big data”, has provided significant opportunities for public health surveillance using user-generated content. However, relatively little attention has been focused on developing ethically appropriate approaches to working with these new data sources.
Objective
Based on a review of the literature, this study seeks to develop a taxonomy of public health surveillance-related ethical concepts that emerge when using Twitter data, with a view to: (1) explicitly identifying a set of potential ethical issues and concerns that may arise when researchers work with Twitter data, and (2) providing a starting point for the formation of a set of best practices for public health surveillance through the development of an empirically derived taxonomy of ethical concepts.
Methods
We searched Medline, Compendex, PsycINFO, and the Philosopher’s Index using a set of keywords selected to identify Twitter-related research papers that reference ethical concepts. Our initial set of queries identified 342 references across the four bibliographic databases. We screened titles and abstracts of these references using our inclusion/exclusion criteria, eliminating duplicates and unavailable papers, until 49 references remained. We then read the full text of these 49 articles and discarded 36, resulting in a final inclusion set of 13 articles. Ethical concepts were then identified in each of these 13 articles. Finally, based on a close reading of the text, a taxonomy of ethical concepts was constructed based on ethical concepts discovered in the papers.
Results
From these 13 articles, we iteratively generated a taxonomy of ethical concepts consisting of 10 top level categories: privacy, informed consent, ethical theory, institutional review board (IRB)/regulation, traditional research vs Twitter research, geographical information, researcher lurking, economic value of personal information, medical exceptionalism, and benefit of identifying socially harmful medical conditions.
Conclusions
In summary, based on a review of the literature, we present a provisional taxonomy of public health surveillance-related ethical concepts that emerge when using Twitter data.
doi:10.2196/jmir.3617
PMCID: PMC4285736  PMID: 25533619
social media; twitter messaging; ethics
24.  Therapeutic Affordances of Social Media: Emergent Themes From a Global Online Survey of People With Chronic Pain 
Background
Research continues to present tenuous suggestions that social media is well suited to enhance management of chronic disease and improve health outcomes. Various studies have presented qualitative reports of health outcomes from social media use and have examined discourse and communication themes occurring through different social media. However, there is an absence of published studies examining and unpacking the underlying therapeutic mechanisms driving social media’s effects.
Objective
This paper presents a qualitative analysis thoroughly describing what social media therapeutically affords people living with chronic pain who are self-managing their condition. From this therapeutic affordance perspective, we aim to formulate a preliminary conceptual model aimed at better understanding "how" social media can influence patient outcomes.
Methods
In total, 218 people with chronic pain (PWCP) completed an online survey, investigating patient-reported outcomes (PROs) from social media use. Supplementary to quantitative data collected, participants were also given the opportunity to provide further open commentary regarding their use of social media as part of chronic pain management; 68/218 unique users (31.2%) chose to provide these free-text responses. Through thematic content analysis, 117 free-text responses regarding 10 types of social media were coded. Quotes were extracted and tabulated based on therapeutic affordances that we had previously identified. Inductive analysis was then performed to code defining language and emergent themes central to describing each affordance. Three investigators examined the responses, developed the coding scheme, and applied the coding to the data.
Results
We extracted 155 quotes from 117 free-text responses. The largest source of quotes came from social network site users (78/155, 50.3%). Analysis of component language used to describe the aforementioned affordances and emergent themes resulted in a final revision and renaming of therapeutic affordances: "exploration" (52/155, 33.5% of quotes), "connection" (50/155, 32.3% of quotes), "narration" (33/155, 21.3% of quotes), "adaptation" (13/155, 8.4% of quotes), and "self-presentation" (7/155, 4.5% of quotes). Of the most described affordances, "exploration" was based on a propensity for participants to explain their social media use for information seeking purposes. "Connection" placed greater emphasis on interaction, highlighting themes of "exchanging information" and "mitigating isolation". Responses regarding "narration" highlighted the value of shared experiences and the emotionally cathartic role this plays.
Conclusions
Much of the efficacy of social media may be explicable via a closer examination of therapeutic affordances. Particular areas that warrant attention include social media’s ability to filter and guide people to useful information, connect individuals, and share experiences. Further research into a variety of chronic conditions is warranted. Coupled with the results of the present study, a greater theoretical basis detailing how social media may foster health outcomes may lead to an improved evidence base for conducting research and may inform recommendations for social media use in chronic disease management.
doi:10.2196/jmir.3494
PMCID: PMC4285739  PMID: 25533453
social media; chronic disease; chronic pain; therapeutic affordances; thematic content analysis; patient-reported outcomes; model
25.  Consumer Participation in Quality Improvements for Chronic Disease Care: Development and Evaluation of an Interactive Patient-Centered Survey to Identify Preferred Service Initiatives 
Background
With increasing attention given to the quality of chronic disease care, a measurement approach that empowers consumers to participate in improving quality of care and enables health services to systematically introduce patient-centered initiatives is needed. A Web-based survey with complex adaptive questioning and interactive survey items would allow consumers to easily identify and prioritize detailed service initiatives.
Objective
The aim was to develop and test a Web-based survey capable of identifying and prioritizing patient-centered initiatives in chronic disease outpatient services. Testing included (1) test-retest reliability, (2) patient-perceived acceptability of the survey content and delivery mode, and (3) average completion time, completion rates, and Flesch-Kincaid reading score.
Methods
In Phase I, the Web-based Consumer Preferences Survey was developed based on a structured literature review and iterative feedback from expert groups of service providers and consumers. The touchscreen survey contained 23 general initiatives, 110 specific initiatives available through adaptive questioning, and a relative prioritization exercise. In Phase II, a pilot study was conducted within 4 outpatient clinics to evaluate the reliability properties, patient-perceived acceptability, and feasibility of the survey. Eligible participants were approached to complete the survey while waiting for an appointment or receiving intravenous therapy. The age and gender of nonconsenters was estimated to ascertain consent bias. Participants with a subsequent appointment within 14 days were asked to complete the survey for a second time.
Results
A total of 741 of 1042 individuals consented to participate (71.11% consent), 529 of 741 completed all survey content (78.9% completion), and 39 of 68 completed the test-retest component. Substantial or moderate reliability (Cohen’s kappa>0.4) was reported for 16 of 20 general initiatives with observed percentage agreement ranging from 82.1%-100.0%. The majority of participants indicated the Web-based survey was easy to complete (97.9%, 531/543) and comprehensive (93.1%, 505/543). Participants also reported the interactive relative prioritization exercise was easy to complete (97.0%, 189/195) and helped them to decide which initiatives were of most importance (84.6%, 165/195). Average completion time was 8.54 minutes (SD 3.91) and the Flesch-Kincaid reading level was 6.8. Overall, 84.6% (447/529) of participants indicated a willingness to complete a similar survey again.
Conclusions
The Web-based Consumer Preferences Survey is sufficiently reliable and highly acceptable to patients. Based on completion times and reading level, this tool could be integrated in routine clinical practice and allows consumers to easily participate in quality evaluation. Results provide a comprehensive list of patient-prioritized initiatives for patients with major chronic conditions and delivers practice-ready evidence to guide improvements in patient-centered care.
doi:10.2196/jmir.3545
PMCID: PMC4285719  PMID: 25532217
ambulatory care; health care surveys; patient-centered care; consumer participation; medical oncology; chronic disease; cardiology; neurology

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