JMIR Publications

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  Data Science

  Jan 23, 2020

  Systematic Evaluation of Research Progress on Natural Language Processing in Medicine Over the Past 20 Years: Bibliometric Study on PubMed

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  Authors List:

  • Jing Wang  
  • Huan Deng  
  • Bangtao Liu  
  • Anbin Hu  
  • Jun Liang  
  • Lingye Fan  
  • Xu Zheng  
  • Tong Wang  
  • Jianbo Lei  

  Abstract:

  Background: Natural language processing (NLP) is an important traditional field in computer science, but its application in medical research has faced many challenges. With the extensive digitalization of medical information globally and increasing importance of understanding and mining big data in the medical field, NLP is becoming more crucial. Objective: The goal of the research was to perform a systematic review on the use of NLP in medical research with the aim of understanding the global progress on NLP research outcomes, content, methods, and study groups involved. Methods: A systematic review was conducted using the PubMed database as a search platform. All published studies on the application of NLP in medicine (except biomedicine) during the 20 years between 1999 and 2018 were retrieved. The data obtained from these published studies were cleaned and structured. Excel (Microsoft Corp) and VOSviewer (Nees Jan van Eck and Ludo Waltman) were used to perform bibliometric analysis of publication trends, author orders, countries, institutions, collaboration relationships, research hot spots, diseases studied, and research methods. Results: A total of 3498 articles were obtained during initial screening, and 2336 articles were found to meet the study criteria after manual screening. The number of publications increased every year, with a significant growth after 2012 (number of publications ranged from 148 to a maximum of 302 annually). The United States has occupied the leading position since the inception of the field, with the largest number of articles published. The United States contributed to 63.01% (1472/2336) of all publications, followed by France (5.44%, 127/2336) and the United Kingdom (3.51%, 82/2336). The author with the largest number of articles published was Hongfang Liu (70), while Stéphane Meystre (17) and Hua Xu (33) published the largest number of articles as the first and corresponding authors. Among the first author’s affiliation institution, Columbia University published the largest number of articles, accounting for 4.54% (106/2336) of the total. Specifically, approximately one-fifth (17.68%, 413/2336) of the articles involved research on specific diseases, and the subject areas primarily focused on mental illness (16.46%, 68/413), breast cancer (5.81%, 24/413), and pneumonia (4.12%, 17/413). Conclusions: NLP is in a period of robust development in the medical field, with an average of approximately 100 publications annually. Electronic medical records were the most used research materials, but social media such as Twitter have become important research materials since 2015. Cancer (24.94%, 103/413) was the most common subject area in NLP-assisted medical research on diseases, with breast cancers (23.30%, 24/103) and lung cancers (14.56%, 15/103) accounting for the highest proportions of studies. Columbia University and the talents trained therein were the most active and prolific research forces on NLP in the medical field.

  • J Med Internet Res 2020;22(1):e16816

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  Email Communication, Web-Based...

  Jan 23, 2020

  Why Employees (Still) Click on Phishing Links: Investigation in Hospitals

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  Authors List:

  • Mohammad S Jalali  
  • Maike Bruckes  
  • Daniel Westmattelmann  
  • Gerhard Schewe  

  Abstract:

  Background: Hospitals have been one of the major targets for phishing attacks. Despite efforts to improve information security compliance, hospitals still significantly suffer from such attacks, impacting the quality of care and the safety of patients. Objective: This study aimed to investigate why hospital employees decide to click on phishing emails by analyzing actual clicking data. Methods: We first gauged the factors that influence clicking behavior using the theory of planned behavior (TPB) and integrating trust theories. We then conducted a survey in hospitals and used structural equation modeling to investigate the components of compliance intention. We matched employees’ survey results with their actual clicking data from phishing campaigns. Results: Our analysis (N=397) reveals that TPB factors (attitude, subjective norms, and perceived behavioral control), as well as collective felt trust and trust in information security technology, are positively related to compliance intention. However, compliance intention is not significantly related to compliance behavior. Only the level of employees’ workload is positively associated with the likelihood of employees clicking on a phishing link. Conclusions: This is one of the few studies in information security and decision making that observed compliance behavior by analyzing clicking data rather than using self-reported data. We show that, in the context of phishing emails, intention and compliance might not be as strongly linked as previously assumed; hence, hospitals must remain vigilant with vulnerabilities that cannot be easily managed. Importantly, given the significant association between workload and noncompliance behavior (ie, clicking on phishing links), hospitals should better manage employees’ workload to increase information security. Our findings can help health care organizations augment employees’ compliance with their cybersecurity policies and reduce the likelihood of clicking on phishing links.

  • J Med Internet Res 2020;22(1):e16775

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  e-Learning and Medical Education

  Jan 22, 2020

  A Web-Based Dementia Education Program and its Application to an Australian Web-Based Dementia Care Competency and Training Network: Integrative Systematic...

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  Authors List:

  • Anne Moehead  
  • Kathryn DeSouza  
  • Karen Walsh  
  • Sabrina W Pit  

  Abstract:

  Background: Dementia education that meets quality and safety standards is paramount to ensure a highly skilled dementia care workforce. Web-based education provides a flexible and cost-effective medium. To be successful, Web-based education must contain features that promote learning and support knowledge translation into practice. The Dementia Care Competency and Training Network (DCC&TN) has developed an innovative Web-based program that promotes improvement of the attitudes, knowledge, skills, behavior, and practice of clinicians, regardless of their work setting, in order to improve the quality of life for people living with dementia. Objective: This review aims to (1) determine the key features that are associated with an effective and functional Web-based education program—an effective and functional Web-based program is defined as one that measures results, is accessible, is user friendly, and translates into clinical practice—and (2) determine how these features correlate with the DCC&TN. Methods: Six electronic databases—Medline, Embase, Cumulative Index to Nursing and Allied Health Literature (CINAHL), AusHealth, Nursing@Ovid, and Google Scholar—were searched for articles published between 2009 and 2018 using the following keywords: Education, Distance, Continuing, Learning, Online, Web-Based, Internet, Dementia, Program Evaluation, Validation Studies, Outcome and Process Assessment Healthcare, Nursing, Assisted Instruction, and Facilitated. The Critical Appraisal Skills Programme (CASP) and Kirkpatrick’s model for the evaluation of training were used to ensure quality and rigor of the analysis. Results: A total of 46 studies met the inclusion criteria. In total, 14 key features were associated with an effective Web-based learning environment, which enabled the environment to be as follows: self-directed, individualized, interactive, multimodal, flexible, accessible, consistent, cost-effective, measurable with respect to participant satisfaction, equitable, facilitated, nurturing of critical thinking and reflection, supportive of creating a learning community, and translated into practice. These features were further categorized into five subgroups: applicability, attractiveness, functionality, learner interaction, and implementation into practice. Literature frequently cites Kirkpatrick’s four-level model of evaluation and application in the review of education and training; however, few studies appeared to integrate all four levels of Kirkpatrick’s model. Features were then correlated against the DCC&TN, with an encouraging connection found between these features and their inclusion within the content and structure of the DCC&TN. Conclusions: A total of 14 key features were identified that support an effective and functional Web-based learning environment. Few studies incorporated Kirkpatrick’s salient elements of the model—reaction, learning, behavior, and results—in their evaluation and clinical application. It could, therefore, be considered prudent to include Kirkpatrick’s levels of training evaluation within studies of dementia training. There were few studies that evaluated Web-based dementia education programs, with even fewer reporting evidence that Web-based training could increase staff confidence, knowledge, skills, and attitudes toward people with dementia and be sustainable over time. The DCC&TN appeared to contain the majority of key features and is one of the few programs inclusive of hospital, community, and residential care settings. The 14 key features can potentially enhance and complement future development of online training programs for health sciences education and beyond. The DCC&TN model could potentially be used as a template for future developers and evaluators of Web-based dementia training.

  • J Med Internet Res 2020;22(1):e16808

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  Web-based and Mobile Health...

  Jan 22, 2020

  Efficacy of an Electronic Health Management Program for Patients With Cardiovascular Risk: Randomized Controlled Trial

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  Authors List:

  • Young Ho Yun  
  • EunKyo Kang  
  • Young Min Cho  
  • Sang Min Park  
  • Yong-Jin Kim  
  • Hae-Young Lee  
  • Kyae Hyung Kim  
  • Kiheon Lee  
  • Hye Yeon Koo  
  • Soojeong Kim  
  • YeEun Rhee  
  • Jihye Lee  
  • Jeong Hee Min  
  • Jin-Ah Sim  

  Abstract:

  Background: In addition to medication, health behavior management is crucial in patients with multiple risks of cardiovascular mortality. Objective: This study aimed to examine the efficacy of a 3-month Smart Management Strategy for Health–based electronic program (Smart Healthing). Methods: A 2-arm randomized controlled trial was conducted to assess the efficacy of Smart Healthing in 106 patients with at least one indicator of poor disease control and who had hypertension, diabetes, or hypercholesterolemia. The intervention group (n=53) took part in the electronic program, which was available in the form of a mobile app and a Web-based PC application. The program covered 4 areas: self-assessment, self-planning, self-learning, and self-monitoring by automatic feedback. The control group (n=53) received basic educational material concerning disease control. The primary outcome was the percentage of participants who achieved their clinical indicator goal after 12 weeks into the program: glycated hemoglobin (HbA_1c) <7.0%, systolic blood pressure (SBP) <140 mmHg, or low-density lipoprotein cholesterol <130 mg/dL. Results: The intervention group showed a significantly higher success rate (in comparison with the control group) for achieving each of 3 clinical indicators at the targeted goal levels (P<.05). Only the patients with hypertension showed a significant improvement in SBP from the baseline as compared with the control group (72.7% vs 35.7%; P<.05). There was a significant reduction in HbA_1c in the intervention group compared with the control group (difference=0.54%; P≤.05). In the intervention group, 20% of patients with diabetes exhibited a ≥1% decrease in HbA_1c (vs 0% among controls; P≤.05). Conclusions: A short-term self-management strategy-based electronic program intervention may improve clinical outcomes among patients with cardiovascular risks. Clinical Trial: ClinicalTrials.gov NCT03294044; https://clinicaltrials.gov/ct2/show/NCT03294044

  • J Med Internet Res 2020;22(1):e15057

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  Mobile Health (mhealth)

  Jan 21, 2020

  A User-Centered Approach to an Evidence-Based Electronic Health Pain Management Intervention for People With Chronic Pain: Design and Development of EPIO

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  Authors List:

  • Ingrid Konstanse Ledel Solem  
  • Cecilie Varsi  
  • Hilde Eide  
  • Olöf Birna Kristjansdottir  
  • Elin Børøsund  
  • Karlein M G Schreurs  
  • Lori B Waxenberg  
  • Karen E Weiss  
  • Eleshia J Morrison  
  • Mette Haaland-Øverby  
  • Katherine Bevan  
  • Heidi Andersen Zangi  
  • Audun Stubhaug  
  • Lise Solberg Nes  

  Abstract:

  Background: Chronic pain conditions are complicated and challenging to live with. Electronic health (eHealth) interventions show promise in helping people cope with chronic illness, including pain. The success of these interventions depends not only on the technology and intervention content but also on the users’ acceptance and adherence. Involving all stakeholders (eg, patients, spouses, health care providers, designers, software developers, and researchers) and exploring their input and preferences in the design and development process is an important step toward developing meaningful interventions and possibly strengthening treatment outcomes. Objective: The aim of this study was to design and develop a user-centered, evidence-based eHealth self-management intervention for people with chronic pain. Methods: The study employed a multidisciplinary and user-centered design approach. Overall, 20 stakeholders from the project team (ie, 7 researchers, 5 editors, 7 software developers, and 1 user representative), together with 33 external stakeholders (ie, 12 health care providers, 1 health care manger, 1 eHealth research psychologist, and 17 patients with chronic pain and 2 of their spouses) participated in a user-centered development process that included workshops, intervention content development, and usability testing. Intervention content was developed and finalized based on existing evidence, stakeholder input, and user testing. Stakeholder input was examined through qualitative analyses with rapid and in-depth analysis approaches. Results: Analyses from stakeholder input identified themes including a need for reliable, trustworthy, and evidence-based content, personalization, options for feedback, behavioral tracking, and self-assessment/registration as factors to include in the intervention. Evidence-based intervention content development resulted in one face-to-face introduction session and 9 app-based educational and exercise-based modules. Usability testing provided further insight into how to optimize the design of the intervention to the user group, identifying accessibility and a simple design to be essential. Conclusions: The design and development process of eHealth interventions should strive to combine well-known evidence-based concepts with stakeholder input. This study, designing and developing the pain management intervention EPIO, illustrates how a stakeholder-centered design approach can provide essential input in the development of an eHealth self-management intervention for people with chronic pain. Clinical Trial: ClinicalTrials.gov NCT03705104; https://clinicaltrials.gov/ct2/show/NCT03705104

  • J Med Internet Res 2020;22(1):e15889

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  Business and Entrepreneurship in eHealth

  Jan 21, 2020

  Valuable Genomes: Taxonomy and Archetypes of Business Models in Direct-to-Consumer Genetic Testing

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  Authors List:

  • Scott Thiebes  
  • Philipp A Toussaint  
  • Jaehyeon Ju  
  • Jae-Hyeon Ahn  
  • Kalle Lyytinen  
  • Ali Sunyaev  

  Abstract:

  Background: Recent progress in genome data collection and analysis technologies has led to a surge of direct-to-consumer (DTC) genetic testing services. Owing to the clinical value and sensitivity of genomic data, as well as uncertainty and hearsay surrounding business practices of DTC genetic testing service providers, DTC genetic testing has faced significant criticism by researchers and practitioners. Research in this area has centered on ethical and legal implications of providing genetic tests directly to consumers, but we still lack a more profound understanding of how businesses in the DTC genetic testing markets work and provide value to different stakeholders. Objective: The aim of this study was to address the lack of knowledge concerning business models of DTC genetic testing services by systematically identifying the salient properties of various DTC genetic testing service business models as well as discerning dominant business models in the market. Methods: We employed a 3-phased research approach. In phase 1, we set up a database of 277 DTC genetic testing services. In phase 2, we drew on these data as well as conceptual models of DTC genetic testing services and iteratively developed a taxonomy of DTC genetic testing service business models. In phase 3, we used a 2-stage clustering method to cluster the 277 services that we identified during phase 1 and derived 6 dominant archetypes of DTC genetic testing service business models. Results: The contributions of this research are 2-fold. First, we provided a first of its kind, systematically developed taxonomy of DTC genetic testing service business models consisting of 15 dimensions in 4 categories. Each dimension comprises 2 to 5 characteristics and captures relevant aspects of DTC genetic testing service business models. Second, we derived 6 archetypes of DTC genetic testing service business models named as follows: (1) low-cost DTC genomics for enthusiasts, (2) high-privacy DTC genomics for enthusiasts, (3) specific information tests, (4) simple health tests, (5) basic low-value DTC genomics, and (6) comprehensive tests and low data processing. Conclusions: Our analysis paints a much more complex business landscape in the DTC genetic testing market than previously anticipated. This calls for further research on business models and their effects that underlie DTC genetic testing services and invites specific regulatory interventions to protect consumers and level the playing field.

  • J Med Internet Res 2020;22(1):e14890

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  e-Mental Health and Cyberpsychology

  Jan 20, 2020

  Technological State of the Art of Electronic Mental Health Interventions for Major Depressive Disorder: Systematic Literature Review

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  Authors List:

  • Franziska Burger  
  • Mark A Neerincx  
  • Willem-Paul Brinkman  

  Abstract:

  Background: Electronic mental (e-mental) health care for depression aims to overcome barriers to and limitations of face-to-face treatment. Owing to the high and growing demand for mental health care, a large number of such information and communication technology systems have been developed in recent years. Consequently, a diverse system landscape formed. Objective: This literature review aims to give an overview of this landscape of e-mental health systems for the prevention and treatment of major depressive disorder, focusing on three main research questions: (1) What types of systems exist? (2) How technologically advanced are these systems? (3) How has the system landscape evolved between 2000 and 2017? Methods: Publications eligible for inclusion described e-mental health software for the prevention or treatment of major depressive disorder. Additionally, the software had to have been evaluated with end users and developed since 2000. After screening, 270 records remained for inclusion. We constructed a taxonomy concerning software systems, their functions, how technologized these were in their realization, and how systems were evaluated, and then, we extracted this information from the included records. We define here as functions any component of the system that delivers either treatment or adherence support to the user. For this coding process, an elaborate classification hierarchy for functions was developed yielding a total of 133 systems with 2163 functions. The systems and their functions were analyzed quantitatively, with a focus on technological realization. Results: There are various types of systems. However, most are delivered on the World Wide Web (76%), and most implement cognitive behavioral therapy techniques (85%). In terms of content, systems contain twice as many treatment functions as adherence support functions, on average. Furthermore, autonomous systems, those not including human guidance, are equally as technologized and have one-third less functions than guided ones. Therefore, lack of guidance is neither compensated with additional functions nor compensated by technologizing functions to a greater degree. Although several high-tech solutions could be found, the average system falls between a purely informational system and one that allows for data entry but without automatically processing these data. Moreover, no clear increase in the technological capabilities of systems showed in the field, between 2000 and 2017, despite a marked growth in system quantity. Finally, more sophisticated systems were evaluated less often in comparative trials than less sophisticated ones (OR 0.59). Conclusions: The findings indicate that when developers create systems, there is a greater focus on implementing therapeutic treatment than adherence support. Although the field is very active, as evidenced by the growing number of systems developed per year, the technological possibilities explored are limited. In addition to allowing developers to compare their system with others, we anticipate that this review will help researchers identify opportunities in the field.

  • J Med Internet Res 2020;22(1):e12599

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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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