Context:Polycystic ovary syndrome (PCOS) is a complex, chronic and under-recognized disorder. Diagnosis experience may have lasting effects on wellbeing and self-management.Objective:To investigate ...PCOS diagnosis experiences, information provided and concerns about PCOS.Design:Cross-sectional study using an online questionnaire.Setting:Recruitment via support group websites in 2015-2016.Participants:1385 women with a reported diagnosis of PCOS, living in North America (53.0%), Europe (42.2%) or other world regions (4.9%), 64.8% of whom were 18-35 years old.Main Outcome Measures:Satisfaction with PCOS diagnosis experience, satisfaction with PCOS information received at the time of diagnosis, and current concerns about PCOS.Results:One third or more of women reported more than two years (33.6%) and three or more health professionals (47.1%) before a diagnosis was established. The minority were satisfied with their diagnosis experience (35.2%) or with the information they received (15.6%). Satisfaction with PCOS information received was positively associated with diagnosis satisfaction (odds ratio (OR): 7.0 95% confidence interval (CI): 4.9 to 9.9); seeing ≥5 health professionals (OR: 0.5 95%CI: 0.3 to 0.8) and longer time to diagnosis (>2 years OR: 0.4 95%CI: 0.3 to 0.6) were negatively associated with diagnosis satisfaction (independent of time since diagnosis, age and world region). Women’s most common concerns were difficulty losing weight (53.6%), irregular menstrual cycles (50.8%) and infertility (44.5%).Conclusions:In the largest study of PCOS diagnosis experiences, many women reported delayed diagnosis and inadequate information. These major gaps in early diagnosis, education and support are clear opportunities for improving patient experience.
Objective
The objective of this literature review was to summarise current research regarding how consumers seek health‐related information from social media. Primarily, we hope to reveal ...characteristics of existing studies investigating the health topics that consumers have discussed in social media, ascertaining the roles social media have played in consumers’ information‐seeking processes and discussing the potential benefits and concerns of accessing consumer health information in social media.
Methods
The Web of Science Core Collection database was searched for existing literature on consumer health information seeking in social media. The search returned 214 articles, of which 21 met the eligibility criteria following review of full‐text documents.
Conclusion
Between 2011 and 2016, twenty‐one studies published explored various topics related to consumer information seeking in social media. These ranged from online discussions on specific diseases (e.g. diabetes) to public health concerns (e.g. pesticide residues). Consumers’ information needs vary depending on the health issues of interest. Benefits of health seeking on social media, in addition to filling a need for health information, include the social and emotional support health consumers gain from peer‐to‐peer interactions. These benefits, however, are tempered by concerns of information quality and authority and lead to decreased consumer engagement.
A quality-control YouTube-based study using the recognized quality scoring systems.
In this study, our aim was to confirm the accuracy and quality of the information in kyphosis videos shared on ...YouTube.
The Internet is a widely and increasingly used source for obtaining medical information both by patients and clinicians. YouTube, in particular, manifests itself as a leading source with its ease of access to information and visual advantage for Internet users.
The first 50 videos returned by the YouTube search engine in response to "kyphosis" keyword query were included in the study and categorized under seven and six groups, based on their source and content. The popularity of the videos was evaluated with a new index called the video power index (VPI). The quality, educational quality, and accuracy of the source of information were measured using the Journal of American Medical Association (JAMA) score, Global Quality Score (GQS), and Kyphosis-Specific Score (KSS).
Videos had a mean duration of 397 seconds and a mean number of 131,644 views, with a total viewing number of 6,582,221. The source (uploader) in 36% of the videos was a trainer and the content in 46% of the videos was exercise training. Seventy-two percent of the videos were about postural kyphosis. Videos had a mean JAMA score of 1.36 (range: 1-4), GQS of 1.68 (range: 1-5), and KSS of 3.02 (range: 0-32). The academic group had the highest scores and the lowest VPIs.
Online information on kyphosis is low quality and its contents are of unknown source and accuracy. In order to keep the balance in sharing the right information with the patient, clinicians should possess knowledge about the online information related to their field and should contribute to the development of optimal medical videos.
3.
•Only 3.2% of the reviewed articles defined consumer health information needs (CHIN).•All definitions defined CHIN from a cognitive perspective.•Emotional and social dimensions of CHIN were largely ...ignored in the included studies.•There was a lack of consensus in measuring CHIN among studies.•Health topics needed was the most commonly measured aspect.
Information needs motivate human information behavior. Knowledge of information needs is critical for user-centered information behavior research and system design. In consumer health information behavior research, there is a lack of understanding of how consumer health information needs (CHIN) is measured in empirical studies. This study is a systematic review of empirical quantitative studies on CHIN, with a focus on how CHIN is defined and operationalized. A search of six academic databases and citation-track of relevant articles identified a total of 216 relevant articles. These articles were analyzed using the qualitative content analysis method. We found that few included articles explicitly defined either CHIN or information needs in general. When definitions were given, they were from a cognitive perspective and largely ignored the multidimensionality of the concept. Consistent with this cognitive-centered conceptualization, CHIN was operationalized primarily as information topics, with some articles also measuring several additional attributes, including level of importance, fulfilment, amount of information needed, and frequency of needs. These findings suggest that CHIN is undertheorized. To address this gap, future studies should attend to social and emotional dimensions of CHIN, such as motivations, goals, activities, and emotions. Further, more research is needed to understand how CHIN is related to consumer health information seeking behavior and to the social and environmental context in which the needs arise.
Applying a critical-constructivist approach, 21 semi-structured interviews conducted from June to October 2021 were analyzed thematically. Qualitative analysis suggests that users reported that ...Wikipedia’s health content can facilitate personal agency, is familiar and convenient to access, and that individuals’ trust in Wikipedia is contextual, conditional, and framed by their personal experiences.
During global pandemics, such as coronavirus disease 2019 (COVID-19), crisis communication is indispensable in dispelling fears, uncertainty, and unifying individuals worldwide in a collective fight ...against health threats. Inadequate crisis communication can bring dire personal and economic consequences. Mounting research shows that seemingly endless newsfeeds related to COVID-19 infection and death rates could considerably increase the risk of mental health problems. Unfortunately, media reports that include infodemics regarding the influence of COVID-19 on mental health may be a source of the adverse psychological effects on individuals. Owing partially to insufficient crisis communication practices, media and news organizations across the globe have played minimal roles in battling COVID-19 infodemics. Common refrains include raging QAnon conspiracies, a false and misleading "Chinese virus" narrative, and the use of disinfectants to "cure" COVID-19. With the potential to deteriorate mental health, infodemics fueled by a kaleidoscopic range of misinformation can be dangerous. Unfortunately, there is a shortage of research on how to improve crisis communication across media and news organization channels. This paper identifies ways that legacy media reports on COVID-19 and how social media-based infodemics can result in mental health concerns. This paper discusses possible crisis communication solutions that media and news organizations can adopt to mitigate the negative influences of COVID-19 related news on mental health. Emphasizing the need for global media entities to forge a fact-based, person-centered, and collaborative response to COVID-19 reporting, this paper encourages media resources to focus on the core issue of how to slow or stop COVID-19 transmission effectively.
This article reviews the peer-reviewed literature addressing the healthcare information available on YouTube. Inclusion and exclusion criteria were determined, and the online databases PubMed and Web ...of Knowledge were searched using the search phrases: (1) YouTube* AND Health* and (2) YouTube* AND Healthcare*. In all, 18 articles were reviewed, with the results suggesting that (1) YouTube is increasingly being used as a platform for disseminating health information; (2) content and frame analysis were the primary techniques employed by researchers to analyze the characteristics of this information; (3) YouTube contains misleading information, primarily anecdotal, that contradicts the reference standards and the probability of a lay user finding such content is relatively high; (4) the retrieval of relevant videos is dependent on the search term used; and (5) videos from government organizations and professional associations contained trustworthy and high-quality information. YouTube is used as a medium for promoting unscientific therapies and drugs that are yet to be approved by the appropriate agencies and has the potential to change the beliefs of patients concerning controversial topics such as vaccinations. This review recognizes the need to design interventions to enable consumers to critically assimilate the information posted on YouTube with more authoritative information sources to make effective healthcare decisions.
Objective. Innovations in health information technology (HIT) provide opportunities to reduce health care spending, improve quality of care, and improve health outcomes for older adults. However, ...concerns relating to older adults' limited access and use of HIT, including use of the Internet for health information, fuel the digital health divide debate. This study evaluated the potential digital health divide in relation to characteristic and belief differences between older adult users and nonusers of online health information sources. Methods. A cross-sectional survey design was conducted using a random sample of older adults. A total of 225 older adults (age range = 50-92 years, M = 68.9 years, SD = 10.4) participated in the study. Results. Seventy-six percent of all respondents had Internet access. Users and nonusers of online health information differed significantly on age (M = 66.29 vs. M = 71.13), education, and previous experience with the health care system. Users and nonusers of online health information also differed significantly on Internet and technology access, however, a large percentage of nonusers had Internet access (56.3%), desktop computers (55.9%), and laptop computers or netbooks (43.2%). Users of online health information had higher mean scores on the Computer Self-Efficacy Measure than nonusers, t(159) = -7.29, p < .0001. Conclusion. This study found significant differences between older adult users and nonusers of online health information. Findings suggest strategies for reducing this divide and implications for health education programs to promote HIT use among older adults.
The Internet has become one of the most popular sources of information for health consumers and pregnant women are no exception. The primary objective of this review was to investigate the ways in ...which pregnant women used the Internet to retrieve pregnancy-related information.
We conducted a systematic review to answer this question. In November 2014, electronic databases: Scopus, Medline, PreMEDLINE, EMBASE, CINAHL and PubMed were searched for papers with the terms "Internet"; "pregnancy"; "health information seeking", in the title, abstract or as keywords. Restrictions were placed on publication to within 10 years and language of publication was restricted to English. Quantitative studies were sought, that reported original research and described Internet use by pregnant women.
Seven publications met inclusion criteria and were included in the review. Sample size ranged from 182 - 1347 pregnant women. The majority of papers reported that women used the Internet as a source of information about pregnancy. Most women searched for information at least once a month. Fetal development and nutrition in pregnancy were the most often mentioned topics of interest. One paper included in this review found that women with higher education were three times more likely to seek advice than women with less than a high school education, and also that single and multiparous women were less likely to seek advice than married and nulliparous women. The majority of women found health information on the Internet to be reliable and useful.
Most women did not discuss the information they retrieved from the Internet with their health providers. Thus, health providers may not be aware of potentially inaccurate information or mistaken beliefs about pregnancy, reported on the Internet. Future research is needed to address this issue of potentially unreliable information.
Objective. Breast cancer is the most common cancer type among women worldwide. Today, health consumers search the Internet to gain health information about many diseases including breast cancer. ...YouTube™ is the second most commonly used website on the Internet. However, the quality and accuracy of health-related YouTube™ videos are controversial. The objective of this study was to investigate the quality and accuracy of breast cancer-related videos on YouTube™. Material and Methods. “Breast cancer” keyword was entered into YouTube™ search bar, and after excluding advertisement, duplicate, and non-English videos, the first most viewed 50 videos were analyzed. Videos’ length, the number of views, comments, likes, and dislikes were recorded. DISCERN and JAMA scores and Video Power Index (VPI) values of the videos were calculated. All videos were evaluated by two independent radiologists experienced on breast cancer. The correlation between the two observers was also analyzed. Results. Of all videos, 14% were uploaded by physicians, 26% by health channels, 20% by patients, 10% by news channels, 2% by herbalists, 2% by blog channels, and 2% by nonprofit activism channels. The mean DISCERN score was calculated as 26.70±10.99 and the mean JAMA score as 2.23±0.97. The mean VPI value, which was calculated to determine the popularity of the videos, was found as 94.10±4.48. A strong statistically significant correlation was found between the two observers in terms of both DISCERN and JAMA scores. There was an excellent agreement between the two observers. Conclusion. The overall quality of the viewed videos was found as poor. Healthcare professionals should be encouraged to upload breast cancer-related videos with accurate information to promote patients for screening and direct them appropriately.
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