Journal of medical Internet research
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J. Med. Internet Res. · Jun 2019
Association Between Health Literacy, Electronic Health Literacy, Disease-Specific Knowledge, and Health-Related Quality of Life Among Adults With Chronic Obstructive Pulmonary Disease: Cross-Sectional Study.
Despite the relatively high prevalence of low health literacy among individuals living with chronic obstructive pulmonary disease (COPD), limited empirical attention has been paid to the cognitive and health literacy-related skills that can uniquely influence patients' health-related quality of life (HRQoL) outcomes. ⋯ Health literacy, but not eHealth literacy, was positively associated with generic HRQoL. However, both health literacy and eHealth literacy were positively associated with lung-specific HRQoL, with higher COPD knowledge indicative of lower lung-specific HRQoL. These results confirm the importance of considering health and eHealth literacy levels when designing patient education programs for people living with COPD. Future research should explore the impact of delivering interventions aimed at improving eHealth and health literacy among patients with COPD, particularly when disease self-management goals are to enhance HRQoL.
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J. Med. Internet Res. · May 2019
ReviewUse and Understanding of Anonymization and De-Identification in the Biomedical Literature: Scoping Review.
The secondary use of health data is central to biomedical research in the era of data science and precision medicine. National and international initiatives, such as the Global Open Findable, Accessible, Interoperable, and Reusable (GO FAIR) initiative, are supporting this approach in different ways (eg, making the sharing of research data mandatory or improving the legal and ethical frameworks). Preserving patients' privacy is crucial in this context. De-identification and anonymization are the two most common terms used to refer to the technical approaches that protect privacy and facilitate the secondary use of health data. However, it is difficult to find a consensus on the definitions of the concepts or on the reliability of the techniques used to apply them. A comprehensive review is needed to better understand the domain, its capabilities, its challenges, and the ratio of risk between the data subjects' privacy on one side, and the benefit of scientific advances on the other. ⋯ Interest is growing for privacy-enhancing techniques in the life sciences community. This interest crosses scientific boundaries, involving primarily computer science, biomedical informatics, and medicine. The variability observed in the use of the terms de-identification and anonymization emphasizes the need for clearer definitions as well as for better education and dissemination of information on the subject. The same observation applies to the methods. Several legislations, such as the American Health Insurance Portability and Accountability Act (HIPAA) and the European General Data Protection Regulation (GDPR), regulate the domain. Using the definitions they provide could help address the variable use of these two concepts in the research community.
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J. Med. Internet Res. · May 2019
Assessing Electronic Health Literacy in the State of Kuwait: Survey of Internet Users From an Arab State.
The internet and social media have become an important source for health information. In 2017, the State of Kuwait ranked first in mobile subscription penetration in the Arab world; nearly 90% of its population uses the internet. Electronic health (eHealth) literacy is important in populations that have easy and affordable access to internet resources to more effectively manage health conditions as well as improve general population health. ⋯ Internet users in Kuwait appear confident in their ability to search for health-related information online compared with other populations, as indicated by aggregate eHEALS scores. Considering this finding, government and health care organizations should shift more efforts from traditional media toward online health information, focusing on the social media outlets that people in Kuwait find more useful for seeking health information.
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J. Med. Internet Res. · May 2019
Validity of Online Screening for Autism: Crowdsourcing Study Comparing Paid and Unpaid Diagnostic Tasks.
Obtaining a diagnosis of neuropsychiatric disorders such as autism requires long waiting times that can exceed a year and can be prohibitively expensive. Crowdsourcing approaches may provide a scalable alternative that can accelerate general access to care and permit underserved populations to obtain an accurate diagnosis. ⋯ Many paid crowd workers on AMT enjoyed answering screening questions from videos, suggesting higher intrinsic motivation to make quality assessments. Paid crowdsourcing provides promising screening assessments of pediatric autism with an average deviation <20% from professional gold standard raters, which is potentially a clinically informative estimate for parents. Parents of children with autism likely overfit their intuition to their own affected child. This work provides preliminary demographic data on raters who may have higher ability to recognize and measure features of autism across its wide range of phenotypic manifestations.
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J. Med. Internet Res. · May 2019
Perspectives of English, Chinese, and Spanish-Speaking Safety-Net Patients on Clinician Computer Use: Qualitative Analysis.
Safety-net systems serve patients with limited health literacy and limited English proficiency (LEP) who face communication barriers. However, little is known about how diverse safety-net patients feel about increasing clinician electronic health record (EHR) use. ⋯ Linguistically diverse patients accept the value of EHR use during outpatient visits but desire more eye contact, verbal warnings before EHR use, and screen-sharing. Safety-net health systems should support clinicians in completing EHR-related tasks during the visit using patient-centered strategies for all patients.