JMIR Publications

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  Quality/Credibility of eHealth...

  Jan 17, 2020

  Tools to Assess the Trustworthiness of Evidence-Based Point-of-Care Information for Health Care Professionals: Systematic Review

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  Authors List:

  • Gerlinde Lenaerts  
  • Geertruida E Bekkering  
  • Martine Goossens  
  • Leen De Coninck  
  • Nicolas Delvaux  
  • Sam Cordyn  
  • Jef Adriaenssens  
  • Patrick Vankrunkelsven  

  Abstract:

  Background: User-friendly information at the point of care should be well structured, rapidly accessible, and comprehensive. Also, this information should be trustworthy, as it will be used by health care practitioners to practice evidence-based medicine. Therefore, a standard, validated tool to evaluate the trustworthiness of such point-of-care information resources is needed. Objective: This systematic review sought to search for tools to assess the trustworthiness of point-of-care resources and to describe and analyze the content of these tools. Methods: A systematic search was performed on three sources: (1) we searched online for initiatives that worked off of the trustworthiness of medical information; (2) we searched Medline (PubMed) until June 2019 for relevant literature; and (3) we scanned reference lists and lists of citing papers via Web of Science for each retrieved paper. We included all studies, reports, websites, or methodologies that reported on tools that assessed the trustworthiness of medical information for professionals. From the selected studies, we extracted information on the general characteristics of the tools. As no standard, risk-of-bias assessment instruments are available for these types of studies, we described how each tool was developed, including any assessments on reliability and validity. We analyzed the criteria used in the different tools and divided them into five categories: (1) author-related information; (2) evidence-based methodology; (3) website quality; (4) website design and usability; and (5) website interactivity. The percentage of tools in compliance with these categories and the different criteria were calculated. Results: Included in this review was a total of 17 tools, all published between 1997 and 2018. The tools were developed for different purposes, from a general quality assessment of medical information to very detailed analyses, all specifically for point-of-care resources. However, the development process of the tools was poorly described. Overall, seven tools had a scoring system implemented, two were assessed for reliability only, and two other tools were assessed for both validity and reliability. The content analysis showed that all the tools assessed criteria related to an evidence-based methodology: 82% of the tools assessed author-related information, 71% assessed criteria related to website quality, 71% assessed criteria related to website design and usability, and 47% of the tools assessed criteria related to website interactivity. There was significant variability in criteria used, as some were very detailed while others were more broadly defined. Conclusions: The 17 included tools encompass a variety of items important for the assessment of the trustworthiness of point-of-care information. Overall, two tools were assessed for both reliability and validity, but they lacked some essential criteria for the assessment of the trustworthiness of medical information for use at the point-of-care. Currently, a standard, validated tool does not exist. The results of this review may contribute to the development of such an instrument, which may enhance the quality of point-of-care information in the long term.

  • J Med Internet Res 2020;22(1):e15415

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  Web-based and Mobile Health...

  Jan 17, 2020

  Tools for App- and Web-Based Self-Testing of Cognitive Impairment: Systematic Search and Evaluation

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  Authors List:

  • Anna Pavlina Charalambous  
  • Annie Pye  
  • Wai Kent Yeung  
  • Iracema Leroi  
  • Malcolm Neil  
  • Chryssoula Thodi  
  • Piers Dawes  

  Abstract:

  Background: Tools for app- and Web-based self-testing for identification of cognitive impairment are widely available but are of uncertain quality. Objective: The objective of this study was to undertake a scoping review of app- and Web-based self-tests for cognitive impairment and determine the validity of these tests. Methods: We conducted systematic searches in electronic databases, including Google search, Google Play Store, and iPhone Operating System App Store, using the search terms “Online OR Internet-based AND Memory OR Brain OR Dementia OR mild cognitive impairment OR MCI AND Test OR Screen OR Check.” Results: We identified 3057 tools, of which 25 were included in the review. Most tools meeting the inclusion criteria assessed multiple cognitive domains. The most frequently assessed domains were memory, attention, and executive function. We then conducted an electronic survey with the developers of the tools to identify data relating to development and validation of each tool. If no response to the survey was received, Google (to identify gray literature), Google Scholar, and Medical Literature Analysis and Retrieval System Online were searched using key terms “(name of developer, if available)” AND “(the name of the tool)” to identify any additional data. Only 7 tools had any information concerning psychometric quality, and only 1 tool reported data on performance norms, reliability, validity, sensitivity, and specificity for the detection of cognitive impairment. Conclusions: The number of cognitive self-assessment electronic health tools for cognitive impairment is increasing, but most are of uncertain quality. There is a need for well-validated tools and guidance for users concerning which tools provide reliable information about possible cognitive impairment that could warrant further investigation.

  • J Med Internet Res 2020;22(1):e14551

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  Viewpoint

  Jan 15, 2020

  The True Colours Remote Symptom Monitoring System: A Decade of Evolution

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  Authors List:

  • Sarah M Goodday  
  • Lauren Atkinson  
  • Guy Goodwin  
  • Kate Saunders  
  • Matthew South  
  • Clare Mackay  
  • Mike Denis  
  • Chris Hinds  
  • Mary-Jane Attenburrow  
  • Jim Davies  
  • James Welch  
  • William Stevens  
  • Karen Mansfield  
  • Juulia Suvilehto  
  • John Geddes  

  Abstract:

  The True Colours remote mood monitoring system was developed over a decade ago by researchers, psychiatrists, and software engineers at the University of Oxford to allow patients to report on a range of symptoms via text messages, Web interfaces, or mobile phone apps. The system has evolved to encompass a wide range of measures, including psychiatric symptoms, quality of life, and medication. Patients are prompted to provide data according to an agreed personal schedule: weekly, daily, or at specific times during the day. The system has been applied across a number of different populations, for the reporting of mood, anxiety, substance use, eating and personality disorders, psychosis, self-harm, and inflammatory bowel disease, and it has shown good compliance. Over the past decade, there have been over 36,000 registered True Colours patients and participants in the United Kingdom, with more than 20 deployments of the system supporting clinical service and research delivery. The system has been adopted for routine clinical care in mental health services, supporting more than 3000 adult patients in secondary care, and 27,263 adolescent patients are currently registered within Oxfordshire and Buckinghamshire. The system has also proven to be an invaluable scientific resource as a platform for research into mood instability and as an electronic outcome measure in randomized controlled trials. This paper aimed to report on the existing applications of the system, setting out lessons learned, and to discuss the implications for tailored symptom monitoring, as well as the barriers to implementation at a larger scale.

  • J Med Internet Res 2020;22(1):e15188

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  Quality/Credibility of eHealth...

  Jan 15, 2020

  You Get What You Pay for on Health Care Question and Answer Platforms: Nonparticipant Observational Study

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  Authors List:

  • Fatemeh Ameri  
  • Kathleen Keeling  
  • Reza Salehnejad  

  Abstract:

  Background: Seeking health information on the internet is very popular despite the debatable ability of lay users to evaluate the quality of health information and uneven quality of information available on the Web. Consulting the internet for health information is pervasive, particularly when other sources are inaccessible because of time, distance, and money constraints or when sensitive or embarrassing questions are to be explored. Question and answer (Q&A) platforms are Web-based services that provide personalized health advice upon the information seekers’ request. However, it is not clear how the quality of health advices is ensured on these platforms. Objective: The objective of this study was to identify how platform design impacts the quality of Web-based health advices and equal access to health information on the internet. Methods: A total of 900 Q&As were collected from 9 Q&A platforms with different design features. Data on the design features for each platform were generated. Paid physicians evaluated the data to quantify the quality of health advices. Guided by the literature, the design features that affected information quality were identified and recorded for each Q&A platform. The least absolute shrinkage and selection operator and unbiased regression tree methods were used for the analysis. Results: Q&A platform design and health advice quality were related. Expertise of information providers (beta=.48; P=.001), financial incentive (beta=.4; P=.001), external reputation (beta=.28; P=.002), and question quality (beta=.12; P=.001) best predicted health advice quality. Virtual incentive, Web 2.0 mechanisms, and reputation systems were not associated with health advice quality. Conclusions: Access to high-quality health advices on the internet is unequal and skewed toward high-income and high-literacy groups. However, there are possibilities to generate high-quality health advices for free.

  • J Med Internet Res 2020;22(1):e13534

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  Theme issue 2019: Using Technology to...

  Jan 14, 2020

  Visualizing an Ethics Framework: A Method to Create Interactive Knowledge Visualizations From Health Policy Documents

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  Authors List:

  • Joanna Sleigh  
  • Manuel Schneider  
  • Julia Amann  
  • Effy Vayena  

  Abstract:

  Background: Data have become an essential factor in driving health research and are key to the development of personalized and precision medicine. Primary and secondary use of personal data holds significant potential for research; however, it also introduces a new set of challenges around consent processes, privacy, and data sharing. Research institutions have issued ethical guidelines to address challenges and ensure responsible data processing and data sharing. However, ethical guidelines directed at researchers and medical professionals are often complex; require readers who are familiar with specific terminology; and can be hard to understand for people without sufficient background knowledge in legislation, research, and data processing practices. Objective: This study aimed to visually represent an ethics framework to make its content more accessible to its stakeholders. More generally, we wanted to explore the potential of visualizing policy documents to combat and prevent research misconduct by improving the capacity of actors in health research to handle data responsibly. Methods: We used a mixed methods approach based on knowledge visualization with 3 sequential steps: qualitative content analysis (open and axial coding, among others); visualizing the knowledge structure, which resulted from the previous step; and adding interactive functionality to access information using rapid prototyping. Results: Through our iterative methodology, we developed a tool that allows users to explore an ethics framework for data sharing through an interactive visualization. Our results represent an approach that can make policy documents easier to understand and, therefore, more applicable in practice. Conclusions: Meaningful communication and understanding each other remain a challenge in various areas of health care and medicine. We contribute to advancing communication practices through the introduction of knowledge visualization to bioethics to offer a novel way to tackle this relevant issue.

  • J Med Internet Res 2020;22(1):e16249

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  Consumer & Patient Education and...

  Jan 14, 2020

  An Online Pain Education Program for Working Adults: Pilot Randomized Controlled Trial

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  Authors List:

  • Yajie Li  
  • Mun Yee Mimi Tse  

  Abstract:

  Background: Pain is a common public health concern, and the pain situation among the general population is serious in mainland China. Working adults commonly experience pain because of long sitting times, a lack of free time, and exercise. A lack of pain-related knowledge is also a significant factor. Educational and therapeutic programs delivered online were used more often in Western countries, and accessible programs in China are limited, especially for pain management. Therefore, we carried out an online pain education program for working adults to self-manage pain. The program was delivered through WeChat, a popular and secure social media with a large population base in China. Objective: This study aimed to (1) provide pain-related knowledge and self-relief strategies, (2) help participants reduce pain and improve pain-related emotional well-being, and (3) explore participants’ learning performance and the acceptability of the online pain education program. Methods: This was a randomized controlled trial. Chinese adults aged between 16 and 60 years with full-time employment, with pain in the past 6 months, and without any mental illness were recruited using snowball sampling through the internet and were randomly allocated to an experimental group and a control group in 1:1 ratio after the baseline assessment. The 4-week educational program that included basic knowledge of pain, pharmacological and nonpharmacological treatments, and related resources was provided only to the experimental group. Outcomes of pain, depression, anxiety, stress, and pain self-efficacy were measured at baseline (T0), posttreatment (T1), and 1-month follow-up (T2). Participants’ acceptability and satisfaction were explored after completing the educational program. Results: In total, 95 eligible participants joined in the program: 47 in the experimental group and 48 in the control group. Neck and shoulder, head, and back were most commonly reported pain sites with high pain scores. Pain intensity and interference of the experimental group were significantly reduced after the educational program. Depression, anxiety, and stress clinically improved and pain self-efficacy improved after the educational program. The difference in depression, anxiety, stress, and pain self-efficacy within a group or between groups was not statistically significant; however, clinical improvements were demonstrated. A significant correlation between dosage of the intervention and pain intensity and depression was demonstrated. After completing the educational program, more than half of the participants showed acceptance of and satisfaction with the program, and they were willing to recommend the program to others. Conclusions: Our findings highlight the significant potential of this online education program in the treatment of pain. Clinical Trial: ClinicalTrials.gov NCT03952910; https://clinicaltrials.gov/ct2/show/NCT03952910

  • J Med Internet Res 2020;22(1):e15071

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  Medicine 2.0: Social Media, Open,...

  Jan 14, 2020

  A Data-Driven Social Network Intervention for Improving Organ Donation Awareness Among Minorities: Analysis and Optimization of a Cross-Sectional Study

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  Authors List:

  • Michael Douglas Murphy  
  • Diego Pinheiro  
  • Rahul Iyengar  
  • Gene Lim  
  • Ronaldo Menezes  
  • Martin Cadeiras  

  Abstract:

  Background: Increasing the number of organ donors may enhance organ transplantation, and past health interventions have shown the potential to generate both large-scale and sustainable changes, particularly among minorities. Objective: This study aimed to propose a conceptual data-driven framework that tracks digital markers of public organ donation awareness using Twitter and delivers an optimized social network intervention (SNI) to targeted audiences using Facebook. Methods: We monitored digital markers of organ donation awareness across the United States over a 1-year period using Twitter and examined their association with organ donation registration. We delivered this SNI on Facebook with and without optimized awareness content (ie, educational content with a weblink to an online donor registration website) to low-income Hispanics in Los Angeles over a 1-month period and measured the daily number of impressions (ie, exposure to information) and clicks (ie, engagement) among the target audience. Results: Digital markers of organ donation awareness on Twitter are associated with donation registration (beta=.0032; P<.001) such that 10 additional organ-related tweets are associated with a 3.20% (33,933/1,060,403) increase in the number of organ donor registrations at the city level. In addition, our SNI on Facebook effectively reached 1 million users, and the use of optimization significantly increased the rate of clicks per impression (beta=.0213; P<.004). Conclusions: Our framework can provide a real-time characterization of organ donation awareness while effectively delivering tailored interventions to minority communities. It can complement past approaches to create large-scale, sustainable interventions that are capable of raising awareness and effectively mitigate disparities in organ donation.

  • J Med Internet Res 2020;22(1):e14605

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  Personal Health Records,...

  Jan 14, 2020

  Patient Recommendations to Improve the Implementation of and Engagement With Portals in Acute Care: Hospital-Based Qualitative Study

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  Authors List:

  • S Ryan Greysen  
  • Yimdriuska Magan  
  • Jamie Rosenthal  
  • Ronald Jacolbia  
  • Andrew D Auerbach  
  • James D Harrison  

  Abstract:

  Background: The inclusion of patient portals into electronic health records in the inpatient setting lags behind progress in the outpatient setting. Objective: The aim of this study was to understand patient perceptions of using a portal during an episode of acute care and explore patient-perceived barriers and facilitators to portal use during hospitalization. Methods: We utilized a mixed methods approach to explore patient experiences in using the portal during hospitalization. All patients received a tablet with a brief tutorial, pre- and postuse surveys, and completed in-person semistructured interviews. Qualitative data were coded using thematic analysis to iteratively develop 18 codes that were integrated into 3 themes framed as patient recommendations to hospitals to improve engagement with the portal during acute care. Themes from these qualitative data guided our approach to the analysis of quantitative data. Results: We enrolled 97 participants: 53 (53/97, 55%) women, 44 (44/97, 45%) nonwhite with an average age of 48 years (19-81 years), and the average length of hospitalization was 6.4 days. A total of 47 participants (47/97, 48%) had an active portal account, 59 participants (59/97, 61%) owned a smartphone, and 79 participants (79/97, 81%) accessed the internet daily. In total, 3 overarching themes emerged from the qualitative analysis of interviews with these patients during their hospital stay: (1) hospitals should provide both access to a device and bring-your-own-device platform to access the portal; (2) hospitals should provide an orientation both on how to use the device and how to use the portal; and (3) hospitals should ensure portal content is up to date and easy to understand. Conclusions: Patients independently and consistently identified basic needs for device and portal access, education, and usability. Hospitals should prioritize these areas to enable successful implementation of inpatient portals to promote greater patient engagement during acute care. Clinical Trial: ClinicalTrials.gov NCT00102401; https://clinicaltrials.gov/ct2/show/NCT01970852

  • J Med Internet Res 2020;22(1):e13337

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  Recruitment of Research Participants

  Jan 13, 2020

  The Impact of Advertisement Messaging on Enrollment of Young Men Who Have Sex With Men for Web-Based Research: Observational Study

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  Authors List:

  • Holly B Fontenot  
  • Nadia N Abuelezam  
  • Joshua G Rosenberger  
  • David Novak  
  • Kenneth H Mayer  
  • Gregory Zimet  

  Abstract:

  Background: Recruiting young men who have sex with men (YMSM) in community settings is difficult. The use of Web-based social networks and dating apps for recruitment can be successful approaches, although little work has been done on the impact of study advertisement content on recruitment. Objective: The aim of this study was to evaluate the effects of advertisement message content on the recruitment of YMSM (aged 18-26 years) for a Web-based focus group study, examining perspectives and preferences for a mobile app that was designed to support sexual health among YMSM. Methods: Between March and April 2017, a recruitment campaign to promote human papillomavirus vaccination was launched on a popular social networking and dating app for YMSM, with 3 different text-based advertisement themes (technology, cancer prevention, and sexual innuendo). The campaign recruited YMSM across 3 states (Massachusetts, New York, and Pennsylvania). We examined the click-through rates, conversion rates, and enrollment rates of each of the advertisements and examined differences in views and clicks by age, state, and time of day. Results: The sexual innuendo advertisement had the highest click rates when compared with both the technology (click rate ratio [CRR] 2.06, 95% CI 1.74-2.45) and cancer prevention (CRR 1.62, 95% CI 1.38-1.90) advertisements. The sexual innuendo advertisement also had higher study enrollment rates compared with the technology (CRR 1.90, 95% CI 1.23-2.83) and cancer prevention (CRR 2.06, 95% CI 1.37-3.13) advertisements. No differences were observed in clicks or enrollment by age, state, or time of day. Conclusions: Our marketing campaign, targeting YMSM, was effective in recruiting participants for a qualitative study, using Web-based focus groups. The sexual innuendo advertisement was the most effective and cost-efficient advertisement of the 3 approaches trialed. Different populations need different targeted strategies for study recruitment. Researchers should work with key representatives to develop and test culturally relevant messaging and approaches that utilize current and popular technologies.

  • J Med Internet Res 2020;22(1):e16027

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  Web-based and Mobile Health...

  Jan 13, 2020

  A Culturally Targeted eLearning Module on Organ Donation (Promotoras de Donación): Design and Development

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  Authors List:

  • Gerard P Alolod  
  • Heather Gardiner  
  • Chidera Agu  
  • Jennie L Turner  
  • Patrick J Kelly  
  • Laura A Siminoff  
  • Elisa J Gordon  
  • Robert Norden  
  • Theresa A Daly  
  • Amanda Benitez  
  • Ilda Hernandez  
  • Nancy Guinansaca  
  • Lori Ramos Winther  
  • Caroline D Bergeron  
  • Antonette Montalvo  
  • Tony Gonzalez  

  Abstract:

  Background: As an overrepresented population on the transplant waitlist, stagnated rates of organ donation registration among Latinxs must be redressed. Promotoras (community health workers), who are effective at advocating and spearheading health promotion efforts in the Latinx community, show promise in their ability to educate about organ donation and donor registration. Objective: This study aimed (1) to develop an interactive, evidence-based program to educate promotoras about organ donation, the need for organ donors in the Latinx American community, and ways to register as deceased organ donors and (2) to train promotoras to lead discussions about organ donation and to promote the act of donor registration. Methods: In partnership with 4 promotoras organizations, the culturally targeted Promotoras de Donación eLearning module was developed based on input from 12 focus groups conducted with Latina women (n=61) and promotoras (n=37). Formative work, existing literature, the Vested Interest Theory, and the Organ Donation Model guided curriculum development. In partnership with the Gift of Life Institute and regional promotoras, the curriculum was designed, filmed, and developed in a visually appealing module interface. The module was beta-tested with promotoras before launch. Results: Promotoras de Donación, available in Spanish with English subtitling, lasts just over an hour. The module comprised 6 sections including various activities and videos, with the curriculum divided into a skills-based communication component and a didactic educational component. Pre- and posttests assessed the module’s direct effects on promotoras’ organ donation knowledge and attitudes as well as confidence promoting the act of donor registration. Conclusions: This novel, theoretically and empirically based intervention leveraged the existing network of promotoras to promote the act of donor registration. Future research should assess whether the module helps increase rates of donor registration within Latinx communities and reduce disparities in access to transplantation. Clinical Trial: ClinicalTrials.gov NCT04007419; https://www.clinicaltrials.gov/ct2/show/NCT04007419

  • J Med Internet Res 2020;22(1):e15793

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  Viewpoint

  Jan 13, 2020

  Barriers to Working With National Health Service England’s Open Data

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  Authors List:

  • Seb Bacon  
  • Ben Goldacre  

  Abstract:

  Open data is information made freely available to third parties in structured formats without restrictive licensing conditions, permitting commercial and noncommercial organizations to innovate. In the context of National Health Service (NHS) data, this is intended to improve patient outcomes and efficiency. EBM DataLab is a research group with a focus on online tools which turn our research findings into actionable monthly outputs. We regularly import and process more than 15 different NHS open datasets to deliver OpenPrescribing.net, one of the most high-impact use cases for NHS England’s open data, with over 15,000 unique users each month. In this paper, we have described the many breaches of best practices around NHS open data that we have encountered. Examples include datasets that repeatedly change location without warning or forwarding; datasets that are needlessly behind a “CAPTCHA” and so cannot be automatically downloaded; longitudinal datasets that change their structure without warning or documentation; near-duplicate datasets with unexplained differences; datasets that are impossible to locate, and thus may or may not exist; poor or absent documentation; and withholding of data for dubious reasons. We propose new open ways of working that will support better analytics for all users of the NHS. These include better curation, better documentation, and systems for better dialogue with technical teams.

  • J Med Internet Res 2020;22(1):e15603

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  Web-based and Mobile Health...

  Jan 10, 2020

  Effectiveness and Cost-Effectiveness of a Self-Guided Internet Intervention for Social Anxiety Symptoms in a General Population Sample: Randomized Controlled...

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  Authors List:

  • John Powell  
  • Veronika Williams  
  • Helen Atherton  
  • Kylie Bennett  
  • Yaling Yang  
  • Mina Davoudianfar  
  • Annika Hellsing  
  • Angela Martin  
  • Jill Mollison  
  • Milensu Shanyinde  
  • Ly-Mee Yu  
  • Kathleen M Griffiths  

  Abstract:

  Background: Many people are accessing digital self-help for mental health problems, often with little evidence of effectiveness. Social anxiety is one of the most common sources of mental distress in the population, and many people with symptoms do not seek help for what represents a significant public health problem. Objective: This study aimed to evaluate the effectiveness of a self-guided cognitive behavioral internet intervention for people with social anxiety symptoms in the general population. Methods: We conducted a two-group randomized controlled trial in England between May 11, 2016, and June 27, 2018. Adults with social anxiety symptoms who were not receiving treatment for social anxiety were recruited using online advertisements. All participants had unrestricted access to usual care and were randomized in a 1:1 ratio to either a Web-based unguided self-help intervention based on cognitive behavioral principles or a waiting list control group. All outcomes were collected through self-report online questionnaires. The primary outcome was the change in 17-item Social Phobia Inventory (SPIN-17) score from baseline to 6 weeks using a linear mixed-effect model that used data from all time points (6 weeks, 3 months, 6 months, and 12 months). Results: A total of 2122 participants were randomized, and 6 were excluded from analyses because they were ineligible. Of the 2116 eligible randomized participants (mean age 37 years; 80.24%, 1698/2116 women), 70.13% (1484/2116) had follow-up data available for analysis, and 56.95% (1205/2116) had data on the primary outcome, although attrition was higher in the intervention arm. At 6 weeks, the mean (95% CI) adjusted difference in change in SPIN-17 score in the intervention group compared with control was −1.94 (−3.13 to −0.75; P=.001), a standardized mean difference effect size of 0.2. The improvement was maintained at 12 months. Given the high dropout rate, sensitivity analyses explored missing data assumptions, with results that were consistent with those of the primary analysis. The economic evaluation demonstrated cost-effectiveness with a small health status benefit and a reduction in health service utilization. Conclusions: For people with social anxiety symptoms who are not receiving other forms of help, this study suggests that the use of an online self-help tool based on cognitive behavioral principles can provide a small improvement in social anxiety symptoms compared with no intervention, although dropout rates were high. Clinical Trial: ClinicalTrials.gov NCT02451878; https://clinicaltrials.gov/ct2/show/NCT02451878

  • J Med Internet Res 2020;22(1):e16804

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