JMIR Publications

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  Clinical Information and Decision Making

  Jan 21, 2019

  Assessing the Effectiveness of Engaging Patients and Their Families in the Three-Step Fall Prevention Process Across Modalities of an Evidence-Based Fall...

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  Authors List:

  • Megan Duckworth  
  • Jason Adelman  
  • Katherine Belategui  
  • Zinnia Feliciano  
  • Emily Jackson  
  • Srijesa Khasnabish  
  • I-Fong Sun Lehman  
  • Mary Ellen Lindros  
  • Heather Mortimer  
  • Kasey Ryan  
  • Maureen Scanlan  
  • Linda Berger Spivack  
  • Shao Ping Yu  
  • David Westfall Bates  
  • Patricia C Dykes  

  Abstract:

  Background: Patient falls are a major problem in hospitals. The development of a Patient-Centered Fall Prevention Toolkit, Fall TIPS (Tailoring Interventions for Patient Safety), reduced falls by 25% in acute care hospitals by leveraging health information technology to complete the 3-step fall prevention process—(1) conduct fall risk assessments; (2) develop tailored fall prevention plans with the evidence-based interventions; and (3) consistently implement the plan. We learned that Fall TIPS was most effective when patients and family were engaged in all 3 steps of the fall prevention process. Over the past decade, our team developed 3 Fall TIPS modalities—the original electronic health record (EHR) version, a laminated paper version that uses color to provide clinical decision support linking patient-specific risk factors to the interventions, and a bedside display version that automatically populates the bedside monitor with the patients’ fall prevention plan based on the clinical documentation in the EHR. However, the relative effectiveness of each Fall TIPS modality for engaging patients and family in the 3-step fall prevention process remains unknown. Objective: This study aims to examine if the Fall TIPS modality impacts patient engagement in the 3-step fall prevention process and thus Fall TIPS efficacy. Methods: To assess patient engagement in the 3-step fall prevention process, we conducted random audits with the question, “Does the patient/family member know their fall prevention plan?” In addition, audits were conducted to measure adherence, defined by the presence of the Fall TIPS poster at the bedside. Champions from 3 hospitals reported data from April to June 2017 on 6 neurology and 7 medical units. Peer-to-peer feedback to reiterate the best practice for patient engagement was central to data collection. Results: Overall, 1209 audits were submitted for the patient engagement measure and 1401 for the presence of the Fall TIPS poster at the bedside. All units reached 80% adherence for both measures. While some units maintained high levels of patient engagement and adherence with the poster protocol, others showed improvement over time, reaching clinically significant adherence (>80%) by the final month of data collection. Conclusions: Each Fall TIPS modality effectively facilitates patient engagement in the 3-step fall prevention process, suggesting all 3 can be used to integrate evidence-based fall prevention practices into the clinical workflow. The 3 Fall TIPS modalities may prove an effective strategy for the spread, allowing diverse institutions to choose the modality that fits with the organizational culture and health information technology infrastructure.

  • J Med Internet Res 2019;21(1):e10008

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  Epublishing and Open Access

  Jan 18, 2019

  The Most Influential Medical Journals According to Wikipedia: Quantitative Analysis

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  Authors List:

  • Dariusz Jemielniak  
  • Gwinyai Masukume  
  • Maciej Wilamowski  

  Abstract:

  Background: Wikipedia, the multilingual encyclopedia, was founded in 2001 and is the world’s largest and most visited online general reference website. It is widely used by health care professionals and students. The inclusion of journal articles in Wikipedia is of scholarly interest, but the time taken for a journal article to be included in Wikipedia, from the moment of its publication to its incorporation into Wikipedia, is unclear. Objective: We aimed to determine the ranking of the most cited journals by their representation in the English-language medical pages of Wikipedia. In addition, we evaluated the number of days between publication of journal articles and their citation in Wikipedia medical pages, treating this measure as a proxy for the information-diffusion rate. Methods: We retrieved the dates when articles were included in Wikipedia and the date of journal publication from Crossref by using an application programming interface. Results: From 11,325 Wikipedia medical articles, we identified citations to 137,889 journal articles from over 15,000 journals. There was a large spike in the number of journal articles published in or after 2002 that were cited by Wikipedia. The higher the importance of a Wikipedia article, the higher was the mean number of journal citations it contained (top article, 48.13 [SD 33.67]; lowest article, 6.44 [SD 9.33]). However, the importance of the Wikipedia article did not affect the speed of reference addition. The Cochrane Database of Systematic Reviews was the most cited journal by Wikipedia, followed by The New England Journal of Medicine and The Lancet. The multidisciplinary journals Nature, Science, and the Proceedings of the National Academy of Sciences were among the top 10 journals with the highest Wikipedia medical article citations. For the top biomedical journal papers cited in Wikipedia's medical pages in 2016-2017, it took about 90 days (3 months) for the citation to be used in Wikipedia. Conclusions: We found evidence of “recentism,” which refers to preferential citation of recently published journal articles in Wikipedia. Traditional high-impact medical and multidisciplinary journals were extensively cited by Wikipedia, suggesting that Wikipedia medical articles have robust underpinnings. In keeping with the Wikipedia policy of citing reviews/secondary sources in preference to primary sources, the Cochrane Database of Systematic Reviews was the most referenced journal.

  • J Med Internet Res 2019;21(1):e11429

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  Ethics, Privacy, and Legal Issues

  Jan 17, 2019

  Protecting User Privacy and Rights in Academic Data-Sharing Partnerships: Principles From a Pilot Program at Crisis Text Line

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  Authors List:

  • Anthony R Pisani  
  • Nitya Kanuri  
  • Bob Filbin  
  • Carlos Gallo  
  • Madelyn Gould  
  • Lisa Soleymani Lehmann  
  • Robert Levine  
  • John E Marcotte  
  • Brian Pascal  
  • David Rousseau  
  • Shairi Turner  
  • Shirley Yen  
  • Megan L Ranney  

  Abstract:

  Data sharing between technology companies and academic health researchers has multiple health care, scientific, social, and business benefits. Many companies remain wary about such sharing because of unaddressed concerns about ethics, data security, logistics, and public relations. Without guidance on these issues, few companies are willing to take on the potential work and risks involved in noncommercial data sharing, and the scientific and societal potential of their data goes unrealized. In this paper, we describe the 18-month long pilot of a data-sharing program led by Crisis Text Line (CTL), a not-for-profit technology company that provides a free 24/7 text line for people in crisis. The primary goal of the data-sharing pilot was to design, develop, and implement a rigorous framework of principles and protocols for the safe and ethical sharing of user data. CTL used a stakeholder-based policy process to develop a feasible and ethical data-sharing program. The process comprised forming a data ethics committee; identifying policy challenges and solutions; announcing the program and generating interest; and revising the policy and launching the program. Once the pilot was complete, CTL examined how well the program ran and compared it with other potential program models before putting in place the program that was most suitable for its organizational needs. By drawing on CTL’s experiences, we have created a 3-step set of guidelines for other organizations that wish to develop their own data-sharing program with academic researchers. The guidelines explain how to (1) determine the value and suitability of the data and organization for creating a data-sharing program; (2) decide on an appropriate data sharing and collaboration model; and (3) develop protocols and technical solutions for safe and ethical data sharing and the best organizational structure for implementing the program. An internal evaluation determined that the pilot satisfied CTL’s goals of sharing scientific data and protecting client confidentiality. The policy development process also yielded key principles and protocols regarding the ethical challenges involved in data sharing that can be applied by other organizations. Finally, CTL’s internal review of the pilot program developed a number of alternative models for sharing data that will suit a range of organizations with different priorities and capabilities. In implementing and studying this pilot program, CTL aimed both to optimize its own future data-sharing programs and to inform similar decisions made by others. Open data programs are both important and feasible to establish. With careful planning and appropriate resources, data sharing between big data companies and academic researchers can advance their shared mission to benefit society and improve lives.

  • J Med Internet Res 2019;21(1):e11507

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  Consumer & Patient Education and...

  Jan 17, 2019

  Informing Adults With Back Pain About Placebo Effects: Randomized Controlled Evaluation of a New Website With Potential to Improve Informed Consent in...

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  Authors List:

  • Felicity L Bishop  
  • Maddy Greville-Harris  
  • Jennifer Bostock  
  • Amy Din  
  • Cynthia A Graham  
  • George Lewith  
  • Christina Liossi  
  • Tim O'Riordan  
  • Peter White  
  • Lucy Yardley  

  Abstract:

  Background: Placebo effects and their underpinning mechanisms are increasingly well understood. However, this is poorly communicated to participants in placebo-controlled trials. For valid informed consent, participants should be informed about the potential benefits and risks of participating in placebo-controlled trials. Existing information leaflets often fail to describe the potential benefits and adverse effects associated with placebo allocation. This study tested the effects of a new website designed to inform patients about placebo effects (The Power of Placebos, PoP). PoP was designed using qualitative methods in combination with theory- and evidence-based approaches to ensure it was engaging, informative, and addressed patients’ concerns. Objective: This study aimed to test the effects of PoP, compared with a control website, on people’s knowledge about placebo and the ability to make an informed choice about taking part in a placebo-controlled trial. Methods: A total of 350 adults with back pain recruited from 26 general practices in Southern England participated in this Web-based study. Participants were randomly assigned to PoP (which presented scientifically accurate information about placebo effects in an engaging way) or a control website (based on existing information leaflets from UK trials). Participants self-completed Web-based pre- and postintervention questionnaire measures of knowledge about placebo effects and preintervention questionnaire measures of attitudes toward and intentions to participate in a placebo-controlled trial. The 2 primary outcomes were (1) knowledge and (2) informed choice to take part in a placebo-controlled trial (computed from knowledge, attitudes, and intentions). Results: After viewing PoP, participants had significantly greater knowledge about placebos (mean 8.28 [SD 1.76]; n=158) than participants who viewed the control (mean 5.60 [SD 2.24]; n=174; F1,329=173.821; P<.001; η2=.346). Participants who viewed PoP were 3.16 times more likely than those who viewed the control to make an informed choice about placebos (χ21=36.5; P<.001). Conclusions: In a sample of adults with back pain, PoP increased knowledge and rates of informed choice about placebos compared with a control website. PoP could be used to improve knowledge about placebo effects in back pain. After essential further development and testing in clinical trial settings, it could support informed consent in placebo-controlled trials.

  • J Med Internet Res 2019;21(1):e9955

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  Quality/Credibility of eHealth...

  Jan 16, 2019

  The Absence of Evidence is Evidence of Non-Sense: Cross-Sectional Study on the Quality of Psoriasis-Related Videos on YouTube and Their Reception by Health...

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  Authors List:

  • Simon M Mueller  
  • Pierre Jungo  
  • Lucian Cajacob  
  • Simon Schwegler  
  • Peter Itin  
  • Oliver Brandt  

  Abstract:

  Background: Approximately 80% of internet users access health information online and patients with chronic illnesses especially rely on internet-based resources. YouTube ranks second among the most accessed websites worldwide and hosts an increasing number of videos with medical information. However, their quality is sometimes unscientific, misleading, or even harmful. Objective: As little is known about YouTube as a source of information on psoriasis, we aimed to investigate the quality of psoriasis-related videos and, if necessary, point out strategies for their improvement. Methods: The quality of the 100 most viewed psoriasis-related videos was assessed using the DISCERN instrument and the Global Quality Scale (GQS) by categorizing the videos into useful, misleading, and dangerous and by evaluating the reception of the videos by users. Results: Evaluation of the videos exhibited a total of 117,221,391 views and a total duration of 10:28 hour. The majority of clips contained anecdotal personal experiences with complementary and alternative psoriasis treatments, topical treatments, and nutrition and diets being the most frequently addressed topics. While advertisements accounted for 26.0% (26/100) of the videos, evidence-based health information amounted to only 20.0% (20/100); 32.0% (32/100) of the videos were classified as useful, 52.0% (52/100) as misleading, and 11.0% (11/100) as even dangerous. The quality of the videos evaluated by DISCERN and GQS was generally low (1.87 and 1.95, respectively, on a 1 to 5 scale with 5 being the maximum). Moreover, we found that viewers rated poor-quality videos better than higher quality videos. Conclusions: Our in-depth study demonstrates that nearly two-thirds of the psoriasis-related videos we analyzed disseminate misleading or even dangerous content. Subjective anecdotal and unscientific content is disproportionately overrepresented and poor-quality videos are predominantly rated positively by users, while higher quality video clips receive less positive ratings. Strategies by professional dermatological organizations are urgently needed to improve the quality of information on psoriasis on YouTube and other social media.

  • J Med Internet Res 2019;21(1):e11935

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  Clinical Informatics

  Jan 16, 2019

  Measuring the Impact of an Open Web-Based Prescribing Data Analysis Service on Clinical Practice: Cohort Study on NHS England Data

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  Authors List:

  • Alex J Walker  
  • Helen J Curtis  
  • Richard Croker  
  • Seb Bacon  
  • Ben Goldacre  

  Abstract:

  Background: OpenPrescribing is a freely accessible service that enables any user to view and analyze the National Health Service (NHS) primary care prescribing data at the level of individual practices. This tool is intended to improve the quality, safety, and cost-effectiveness of prescribing. Objective: We aimed to measure the impact of OpenPrescribing being viewed on subsequent prescribing. Methods: Having preregistered our protocol and code, we measured three different metrics of prescribing quality (mean percentile across 34 existing OpenPrescribing quality measures, available “price-per-unit” savings, and total “low-priority prescribing” spend) to see whether they changed after the viewing of Clinical Commissioning Group (CCG) and practice pages. We also measured whether practices whose data were viewed on OpenPrescribing differed in prescribing, prior to viewing, compared with those who were not. We used fixed-effects and between-effects linear panel regression to isolate change over time and differences between practices, respectively. We adjusted for the month of prescribing in the fixed-effects model to remove underlying trends in outcome measures. Results: We found a reduction in available price-per-unit savings for both practices and CCGs after their pages were viewed. The saving was greater at practice level (−£40.42 per thousand patients per month; 95% CI −54.04 to −26.81) than at CCG level (−£14.70 per thousand patients per month; 95% CI −25.56 to −3.84). We estimate a total saving since launch of £243 thosand at practice level and £1.47 million at CCG level between the feature launch and end of follow-up (August to November 2017) among practices viewed. If the observed savings from practices viewed were extrapolated to all practices, this would generate £26.8 million in annual savings for the NHS, approximately 20% of the total possible savings from this method. The other two measures were not different after CCGs or practices were viewed. Practices that were viewed had worse prescribing quality scores overall prior to viewing. Conclusions: We found a positive impact from the use of OpenPrescribing, specifically for the class of savings opportunities that can only be identified by using this tool. Furthermore, we show that it is possible to conduct a robust analysis of the impact of such a Web-based service on clinical practice.

  • J Med Internet Res 2019;21(1):e10929

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  Electronic/Mobile Data Capture,...

  Jan 16, 2019

  A Web-Based Application to Improve Data Collection in an Interventional Study Targeting Childhood Obesity: Pre-Post Analysis

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  Authors List:

  • Meagan M Hanbury  
  • Banafsheh Sadeghi  
  • Iraklis Erik Tseregounis  
  • Rosa Gomez-Camacho  
  • Rosa D Manzo  
  • Maria Isabel Rangel  
  • Bogdan Alexandrescu  
  • Adela de la Torre  

  Abstract:

  Background: Although participatory action research (PAR) studies have proliferated in recent years, the development of technological resources to manage these types of projects has not kept pace. Few studies show how Web-based applications can be used to efficiently manage the data collection process. Objective: This study described the development, use, and impact of a Web-based application to facilitate data management in Niños Sanos, Familia Sana (Healthy Children, Healthy Family), an interventional multifaceted PAR field study. Methods: We described the transformation of the data management process and evaluated the impact of the application in terms of time efficiency of data collection and engagement of community-based data collectors. We defined time efficiency as the total number of days it took to collect 3 main surveys, per year of data collection. The engagement of data collectors was assessed based on qualitative reports. Results: The amount of time it took to perform a round of data collection was reduced after implementation of the field team application (between 382 and 383 days and 198 and 233 days). Secondary data were also collected in a tighter time frame around collection of the primary outcome, and communication among data collectors, the field staff, and the research team was streamlined. In focus groups, community-based data collectors reported feeling more empowered and engaged in the data collection process after implementation of the application. Conclusions: A Web-based management application was successful in improving data collection time efficiency and engagement among data collectors.

  • J Med Internet Res 2019;21(1):e10861

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  Personal Health Records,...

  Jan 16, 2019

  Improving Electronic Health Record Note Comprehension With NoteAid: Randomized Trial of Electronic Health Record Note Comprehension Interventions With...

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  Authors List:

  • John P Lalor  
  • Beverly Woolf  
  • Hong Yu  

  Abstract:

  Background: Patient portals are becoming more common, and with them, the ability of patients to access their personal electronic health records (EHRs). EHRs, in particular the free-text EHR notes, often contain medical jargon and terms that are difficult for laypersons to understand. There are many Web-based resources for learning more about particular diseases or conditions, including systems that directly link to lay definitions or educational materials for medical concepts. Objective: Our goal is to determine whether use of one such tool, NoteAid, leads to higher EHR note comprehension ability. We use a new EHR note comprehension assessment tool instead of patient self-reported scores. Methods: In this work, we compare a passive, self-service educational resource (MedlinePlus) with an active resource (NoteAid) where definitions are provided to the user for medical concepts that the system identifies. We use Amazon Mechanical Turk (AMT) to recruit individuals to complete ComprehENotes, a new test of EHR note comprehension. Results: Mean scores for individuals with access to NoteAid are significantly higher than the mean baseline scores, both for raw scores (P=.008) and estimated ability (P=.02). Conclusions: In our experiments, we show that the active intervention leads to significantly higher scores on the comprehension test as compared with a baseline group with no resources provided. In contrast, there is no significant difference between the group that was provided with the passive intervention and the baseline group. Finally, we analyze the demographics of the individuals who participated in our AMT task and show differences between groups that align with the current understanding of health literacy between populations. This is the first work to show improvements in comprehension using tools such as NoteAid as measured by an EHR note comprehension assessment tool as opposed to patient self-reported scores.

  • J Med Internet Res 2019;21(1):e10793

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  Telehealth and Telemonitoring

  Jan 15, 2019

  Additional Telemedicine Rounds as a Successful Performance-Improvement Strategy for Sepsis Management: Observational Multicenter Study

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  Authors List:

  • Robert Deisz  
  • Susanne Rademacher  
  • Katrin Gilger  
  • Rudolf Jegen  
  • Barbara Sauerzapfe  
  • Christina Fitzner  
  • Christian Stoppe  
  • Carina Benstoem  
  • Gernot Marx  

  Abstract:

  Background: Sepsis is a major health care problem with high morbidity and mortality rates and affects millions of patients. Telemedicine, defined as the exchange of medical information via electronic communication, improves the outcome of patients with sepsis and decreases the mortality rate and length of stay in the intensive care unit (ICU). Additional telemedicine rounds could be an effective component of performance-improvement programs for sepsis, especially in underserved rural areas and hospitals without ready access to critical care physicians. Objective: Our aim was to evaluate the impact of additional daily telemedicine rounds on adherence to sepsis bundles. We hypothesized that additional telemedicine support may increase adherence to sepsis guidelines and improve the detection rates of sepsis and septic shock. Methods: We conducted a retrospective, observational, multicenter study between January 2014 and July 2015 with one tele-ICU center and three ICUs in Germany. We implemented telemedicine as part of standard care and collected data continuously during the study. During the daily telemedicine rounds, routine screening for sepsis was conducted and adherence to the Surviving Sepsis Campaign’s 3-hour and 6-hour sepsis bundles were evaluated. Results: In total, 1168 patients were included in this study, of which 196 were positive for severe sepsis and septic shock. We found that additional telemedicine rounds improved adherence to the 3-hour (Quarter 1, 35% vs Quarter 6, 76.2%; P=.01) and 6-hour (Quarter 1, 50% vs Quarter 6, 95.2%; P=.001) sepsis bundles. In addition, we noted an increase in adherence to the item “Administration of fluids when hypotension” (Quarter 1, 80% vs Quarter 6, 100%; P=.049) of the 3-hour bundle and the item “Remeasurement of lactate” (Quarter 1, 65% vs Quarter 6, 100%, P=.003) of the 6-hour bundle. The ICU length of stay after diagnosis of severe sepsis and septic shock remained unchanged over the observation period. Due to a higher number of patients with sepsis in Quarter 5 (N=60) than in other quarters, we observed stronger effects of the additional rounds on mortality in this quarter (Quarter 1, 50% vs Quarter 5, 23.33%, P=.046). Conclusions: Additional telemedicine rounds are an effective component of and should be included in performance-improvement programs for sepsis management.

  • J Med Internet Res 2019;21(1):e11161

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  Viewpoint

  Jan 14, 2019

  Use of the Principles of Design Thinking to Address Limitations of Digital Mental Health Interventions for Youth: Viewpoint

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  Authors List:

  • Hanneke Scholten  
  • Isabela Granic  

  Abstract:

  Numerous reviews and meta-analyses have indicated the enormous potential of technology to improve the appeal, effectiveness, cost, and reach of mental health interventions. However, the promise of digital mental health interventions for youth has not yet been realized. Significant challenges have been repeatedly identified, including engagement, fidelity, and the lack of personalization. We introduce the main tenets of design thinking and explain how they can specifically address these challenges, with an entirely new toolbox of mindsets and practices. In addition, we provide examples of a new wave of digital interventions to demonstrate the applicability of design thinking to a wide range of intervention goals. In the future, it will be critical for scientists and clinicians to implement their scientific standards, methods, and review outlets to evaluate the contribution of design thinking to the next iteration of digital mental health interventions for youth.

  • J Med Internet Res 2019;21(1):e11528

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  Participatory Medicine & E-Patients

  Jan 14, 2019

  Evaluating Digital Maturity and Patient Acceptability of Real-Time Patient Experience Feedback Systems: Systematic Review

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  Authors List:

  • Mustafa Khanbhai  
  • Kelsey Flott  
  • Ara Darzi  
  • Erik Mayer  

  Abstract:

  Background: One of the essential elements of a strategic approach to improving patients’ experience is to measure and report on patients’ experiences in real time. Real-time feedback (RTF) is increasingly being collected using digital technology; however, there are several factors that may influence the success of the digital system. Objective: The aim of this review was to evaluate the digital maturity and patient acceptability of real-time patient experience feedback systems. Methods: We systematically searched the following databases to identify papers that used digital systems to collect RTF: The Cochrane Library, Global Health, Health Management Information Consortium, Medical Literature Analysis and Retrieval System Online, EMBASE, PsycINFO, Web of Science, and CINAHL. In addition, Google Scholar and gray literature were utilized. Studies were assessed on their digital maturity using a Digital Maturity Framework on the basis of the following 4 domains: capacity/resource, usage, interoperability, and impact. A total score of 4 indicated the highest level of digital maturity. Results: RTF was collected primarily using touchscreens, tablets, and Web-based platforms. Implementation of digital systems showed acceptable response rates and generally positive views from patients and staff. Patient demographics according to RTF responses varied. An overrepresentation existed in females with a white predominance and in patients aged ≥65 years. Of 13 eligible studies, none had digital systems that were deemed to be of the highest level of maturity. Three studies received a score of 3, 2, and 1, respectively. Four studies scored 0 points. While 7 studies demonstrated capacity/resource, 8 demonstrated impact. None of the studies demonstrated interoperability in their digital systems. Conclusions: Patients and staff alike are willing to engage in RTF delivered using digital technology, thereby disrupting previous paper-based feedback. However, a lack of emphasis on digital maturity may lead to ineffective RTF, thwarting improvement efforts. Therefore, given the potential benefits of RTF, health care services should ensure that their digital systems deliver across the digital maturity continuum.

  • J Med Internet Res 2019;21(1):e9076

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  Web-based and Mobile Health...

  Jan 11, 2019

  A Novel Insight Into the Challenges of Diagnosing Degenerative Cervical Myelopathy Using Web-Based Symptom Checkers

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  Authors List:

  • Benjamin Marshall Davies  
  • Colin Fraser Munro  
  • Mark RN Kotter  

  Abstract:

  Background: Degenerative cervical myelopathy (DCM) is a common debilitating condition resulting from degeneration of the cervical spine. While decompressive surgery can halt disease progression, existing spinal cord damage is often permanent, leaving patients with lifelong disability. Early surgery improves the likelihood of recovery, yet the average time from the onset of symptoms to correct diagnosis is over 2 years. The majority of delays occur initially, before and within primary care, mainly due to a lack of recognition. Symptom checkers are widely used by patients before medical consultation and can be useful for preliminary triage and diagnosis. Lack of recognition of DCM by symptom checkers may contribute to the delay in diagnosis. Objective: The aims of this study were to investigate whether Web-based symptom checkers were able to recognize relevant symptoms of DCM, to characterize the DCM differential they returned , and to evaluate the diagnostic performance of recognized DCM symptoms. Methods: We pooled classical DCM symptoms from leading review articles. These symptoms were entered into the algorithms used by the top 20 symptom checker websites (N=4; Google Search). The most widely cited symptom checker, WebMD, was used to characterize the differential diagnosis for DCM symptoms. Results: A total of 31 classical DCM symptoms were identified, of which 45% (14/31) listed DCM as a differential and 10% (3/31) placed DCM in the top third of the differential. The mean differential rank for motor symptoms was significantly better than that for arthritic symptoms (P=.01) and the average differential rank for all symptoms (P=.048). The symptom checker WebMD performed best at recognizing DCM, placing the condition nearer to the top of the differential list (mean rank of 5.6) than either Healthline (rank of 12.9, P=.02) or Healthtools.AARP (rank of 15.5, P=.001). On WebMD, only one combination of symptoms resulted in DCM as the primary differential: neck, shoulder, and arm pain with hand weakness. Moreover, 151 differential diagnoses for DCM symptoms were recorded on WebMD. Multiple sclerosis and peripheral neuropathy were the most common differentials, shortlisted for 52% (16/31) and 32% (10/31) of the DCM symptoms, respectively. Conclusions: DCM symptoms are poorly identified by Web-based symptom checkers, which leads to a large differential of many other common conditions. While a diagnosis becomes more likely as the number of symptoms increases, this represents more advanced disease and will not support much-needed earlier diagnosis. Symptom checkers remain an attractive concept with potential. Further research is required to support their optimization.

  • J Med Internet Res 2019;21(1):e10868

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