Consumer Health Information Research Articles

Consumer health information

Finding reliable, up-to-date health information is critical for all of us, especially as the COVID-19 pandemic continues to rage on (at the time of this writing). There are a tremendous number of websites offering health information, however it can be hard to distinguish quality, evidence-based, unbiased sites from others backed by special interests or promoting particular treatments or points-of-view. As our students, campus community, family members, and friends seek good information on any number of health topics, we, as information professionals, need to be sure we refer them to the best sources. The websites reviewed in this column provide a variety of health information. Sites range from explanations of diseases, conditions, and treatments to medications, children’s health, and how to talk to your doctor. These websites are geared to the general public, not health professionals. They are provided by government agencies like the National Library of Medicine, the National Institutes of Health, US Department of Health and Human Services, and by highly regarded medical providers and nonprofits.

Academic Library COVID-19 Subject Guides

ABSTRACT This study reviewed the coronavirus (COVID-19) resources available on the Times Higher Education top 50 research universities websites. Both general coronavirus resource pages and library subject guides dedicated to the pandemic were examined. The results were compiled into a list of 416 links which were then analyzed. The most common content creators (publishers/authors) were (1) government departments and agencies, (2) academic publishers, (3) international and nonprofit organizations, and (4) universities. The most common types of resources included (1) scholarly article collections (publisher databases or preprint collections), (2) consumer health information, (3) data sets including data maps, and (4) media resources. The examination of library subject guides and university COVID-19 resource pages revealed opportunities for collaboration with other university units in the creation of resource lists for different audiences and the creation of information literacy resources with an emphasis on data literacy.

An Academic Library Utilization of Research Guides to Disseminate Consumer Health Resources

The University of Tennessee, Knoxville Libraries (UT Libraries) utilizes research guides as supplemental training resources, educational tools, and community enrichment aids to support health literacy. This article illustrates case studies of three UT Libraries research guides that provide consumer health information, breaking down each research guide’s development, facilitation, and purpose. As a training resource, the Cultural Competency Guide works to support the course curriculum. The Introduction to Health Sciences Research Guide serves as an educational tool by establishing foundational information for consumer health assimilation. Lastly, the Seed Library & Gardening Guide serves as a community enrichment aid to encourage healthy lifestyles and share food insecurity information that impacts campus and local communities.

Consumer Health Information for Rural Communities

Rural communities experience health disparities that are exacerbated by barriers to reliable health information. This column recommends resources and strategies to increase the accessibility, awareness, and use of authoritative health information for individuals residing in rural areas and for organizations serving rural populations. Several health information needs assessment tools, community outreach materials, and consumer health websites are highlighted, including the Rural Health Information Hub, Cultivate Safety, and the Rural Community Toolbox.

The Quality, Readability, Completeness, and Accuracy of PTSD Websites for Firefighters.

Firefighters appear at an increased risk for post-traumatic stress disorder (PTSD). Because of PTSD-related stigma, firefighters may search for information online. The current study evaluated the quality, readability, and completeness of PTSD online resources, and to determine how the online treatment recommendations align with current evidence. Google.ca (Canada) searches were performed using four phrases: ‘firefighter PTSD’, ‘firefighter operational stress’, ‘PTSD symptoms’, and ‘PTSD treatment’. The 75 websites identified were assessed using quality criteria for consumer health information (DISCERN), readability and health literacy statistics, content analysis, and a comparison of treatments mentioned to the current best evidence. The average DISCERN score was 43.8 out of 75 (indicating ‘fair’ quality), with 9 ‘poor’ websites (16–30), 31 ‘fair’ websites (31–45), 26 “good” websites (46–60), and nine excellent websites (61–75). The average grade level required to understand the health-related content was 10.6. The most mentioned content was PTSD symptoms (48/75 websites) and PTSD treatments (60/75 websites). The most frequently mentioned treatments were medications (41/75 websites) and cognitive behavioural therapy (40/75 websites). Cognitive behavioural therapy is supported by strong evidence, but evidence for medications appears inconsistent in current systematic reviews. Online PTSD resources exist for firefighters, but the information is challenging to read and lacks evidence-based treatment recommendations.

Quality of Bladder Cancer Information on YouTube

Dissemination of misinformation through social media is a major societal issue. Bladder cancer is the second most common urological cancer in the world, but there are limited data on the quality of bladder cancer information on social networks. Our objective was to characterize the quality of information and presence of misinformation about bladder cancer on YouTube, the most commonly used social media platform. We reviewed the first 150 YouTube videos about “bladder cancer” using two validated instruments for consumer health information and assessed the videos for the presence of misinformation. The videos had a median of 2288 views (range, 14–511 342), but the overall quality of information was moderate to poor in 67%, based on scores of 1–3 out of 5 on the validated DISCERN instrument. A moderate to high amount of misinformation was present in 21% of videos and reached 1 289 314 viewers. Commercial bias was apparent in 17% of videos, which reached 324 287 viewers. From a networking perspective, comments sections in the videos were sometimes used to request medical advice (20%), provide medical advice to others (9%), or give support (19%). In conclusion, YouTube is a widely used source of information and advice about bladder cancer, but much of the content is of poor quality. Patient summaryA large quantity of content about bladder cancer is available on YouTube. Unfortunately, much of the content is of moderate to poor quality and presents a risk of exposure to misinformation.

S3294 Are Facebook, Google, and Yelp Good Enough in Deciding Gastroenterologist?

INTRODUCTION: Social Media has become an important platform for public to decide medial services. Reliability of social media on deciding the medical service remains a huge challenge and underdetermined. Dependence of social media for the health information consumption and sharing has produced a proliferation of health-related user-generated content. METHODS: Online search results for the keywords “Gastroenterology doctors in city name” for five major cities (New York, Chicago, Dallas, Seattle and Los Angeles) on the 3 most commonly used web sites (Facebook, Google and Yelp). The top 5 results for each website were studied in detail with respect to the type of allergist practice – University-based or private. We also made a comparative analysis of the order in which the results were displayed in each of these three websites. RESULTS: The search results for 90 websites (Facebook, Yelp, Google) were dominated by private practice all. No academic Gastroenterology practice made the top 5 search results. There was no correlation between the ranking and placement of search results across different websites. The Gastroenterology practices listed at number one on Google in New York City, Chicago, Los Angeles, Dallas and Seattle were not listed among the top 5 results on Facebook. There was no significant correlation between the ranking on Facebook and Yelp. CONCLUSION: Private and Small practices by non- academic gastroenterologist dominate the search results for “Gastroenterologist” in the top 5 metro areas in United States. Academic institute or Academic affiliated institutes do not invest interest in developing their social media as Private practices. No significant correlation has been found between the top search results on the major social media platforms, therefore patients should check all search engines and academic accomplishments before selecting their gastroenterologist. American College of Gastroenterology should further promote their search engines with more enhanced placements of their websites.Table 1

Consumer health information needs: A systematic review of instrument development

Identifying health information needs is an important part of user-centered health information behavior research. Qualitative information behavior studies yield deep insights but have limited generalizability. Quantitative studies using questionnaire instruments offer better generalizability, but only if the instruments are properly developed and validated. A systematic review of the questionnaire instruments used in quantitative studies of health information needs was carried out, focusing on whether the instruments were appropriately developed and validated (including content validity, internal consistency, structural validity, construct validity, and floor and ceiling effects). The questionnaire instruments were grouped into two types: those that assess consumer health information needs, and those that assess patient needs that impact patient quality of life (including health information needs). One hundred and seventeen validation studies for these instruments were identified in the literature and evaluated for their methodological quality and psychometric properties. It was found that, overall, the two groups of questionnaire instruments were not well developed: only structural validity, internal consistency tests and content validity analysis were performed in about 50 percent of them; other types of validations were missing in most of them. Even for the instruments with some validation tests performed, they were usually not designed based on relevant theory to support content validity, lacked specifications for handling missing data; and had inappropriate factor analysis in the structural validity test. Instruments used for assessing patient needs were found to perform better in testing construct validity and evaluating floor and ceiling effects. Practical recommendations include the use of information needs theories and the results of qualitative studies to inform instrument development, as well as the advice on conducting more rigorous validations.

Personal health information management among healthy older adults: Varying needs and approaches.

With age, older adults experience a greater number of chronic diseases and medical visits, and an increased need to manage their health information. Technological advances in consumer health information technologies (HITs) help patients gather, track, and organize their health information within and outside of clinical settings. However, HITs have not focused on the needs of older adults and their caregivers. The goal of the SOARING (Studying Older Adults and Researching their Information Needs and Goals) Project was to understand older adult personal health information management (PHIM) needs and practices to inform the design of HITs that support older adults. Drawing on the Work System Model, we took an ecological approach to investigate PHIM needs and practices of older adults in different residential settings. We conducted in-depth interviews and surveys with adults 60 years of age and older. We performed on-site in-person interview sessions with 88 generally healthy older adults in various settings including independent housing, retirement communities, assisted living, and homelessness. Our analysis revealed 5 key PHIM activities that older adults engage in: seeking, tracking, organizing, sharing health information, and emergency planning. We identified 3 major themes influencing older adults' practice of PHIM: (1) older adults are most concerned with maintaining health and preventing illness, (2) older adults frequently involve others in PHIM activities, and (3) older adults' approach to PHIM is situational and context-dependent. Older adults' approaches to PHIM are dynamic and sensitive to changes in health, social networks, personal habits, motivations, and goals. PHIM tools that meet the needs of older adults should accommodate the dynamic nature of aging and variations in individual, organizational, and social contexts.

Evaluating the health literacy demand and cultural appropriateness of online immunisation information available to refugee and migrant communities in Australia

BackgroundThe internet is a source of health information for many consumers. However, little is known about the availability of online resources about immunisation (for children and adults) directed at refugee and migrant populations. The aim of this study was to evaluate the health literacy demand (understandability, actionability & readability) and cultural appropriateness of immunisation resources in Australia for these communities. MethodsOur study involved two search approaches. Firstly, Google trends was used to identify the most common search terms used in Australia. Search terms used included ‘immunisation’, ‘vaccine’ and ‘refugee immunisation’ amongst others. These search terms were entered into: Google, Bing, Duck Duck Go and Yahoo and the first 5 pages of results for each search were examined. Searches were conducted from November 2018 to June 2019. Secondly, requests were sent out directly to key stakeholders in local health districts and state/territory health departments. Understandability and actionability were assessed using the Patient Education Materials Assessment Tool (PEMAT). The Simple Measure of Gobbledygook (SMOG) and the Flesch readability ease tools were used to assess readability. Cultural appropriateness was assessed using additional criteria developed by the Centre for Culture, Ethnicity and Health (CEH), Victoria, Australia. Results27/33 resources were included in the analysis. The overall mean understandability score was 70% (range: 50–100%). The overall mean actionability score of the resources was 47% (range: 0–83%). In terms of readability, the mean score was a 10.5, which was indicative of an eleventh grade reading level. The average Flesch-Kincaid readability score was 47.7. The average score for cultural appropriateness was 79% (range: 29–100%). ConclusionsOur findings suggest that there are currently not many refugee-specific resources on immunisation. Future work needs to better improve the health literacy demand of online immunisation information. Engaging with members from migrant communities is also recommended so that appropriately tailored resources are co-developed.

Communicating Uncertainty in Written Consumer Health Information to the Public: Parallel-Group, Web-Based Randomized Controlled Trial.

BackgroundUncertainty is integral to evidence-informed decision making and is of particular importance for preference-sensitive decisions. Communicating uncertainty to patients and the public has long been identified as a goal in the informed and shared decision-making movement. Despite this, there is little quantitative research on how uncertainty in health information is perceived by readers.ObjectiveThe aim of this study was to examine the impact of different uncertainty descriptions regarding the evidence for a treatment effect in a written research summary for the public.MethodsWe developed 8 versions of a research summary on a fictitious drug for tinnitus with varying degrees (Q1), sources (Q2), and magnitudes of uncertainty (Q3). We recruited 2099 members of the German public from a web-based research panel. Of these, 1727 fulfilled the inclusion criteria and were randomly presented with one of these research summaries. Randomization was conducted by using a centralized computer with a random number generator. Web-based recruitment and data collection were fully automated. Participants were not aware of the purpose of the study and alternative presentations. We measured the following outcomes: perception of the treatment effectiveness (primary), certainty in the judgement of treatment effectiveness, perception of the body of evidence, text quality, and intended decision. The outcomes were self-assessed.ResultsFor the primary outcome, we did not find a global effect for Q1 and Q2 (P=.25 and P=.73), but we found a global effect for Q3 (P=.048). Pairwise comparisons showed a weaker perception of treatment effectiveness for the research summary with 3 sources of uncertainty compared to the version with 2 sources of uncertainty (P=.04). Specifically, the proportion of the participants in the group with 3 sources of uncertainty that perceived the drug as possibly beneficial was 9% lower than that of the participants in the group with 2 sources of uncertainty (92/195, 47.2% vs 111/197, 56.3%, respectively). The proportion of the participants in the group with 3 sources of uncertainty that considered the drug to be of unclear benefit was 8% higher than that of the participants in the group with 2 sources of uncertainty (72/195, 36.9% vs 57/197, 28.9%, respectively). However, there was no significant difference compared to the version with 1 source of uncertainty (P=.31). We did not find any meaningful differences between the research summaries for the secondary outcomes.ConclusionsCommunicating even a large magnitude of uncertainty for a treatment effect had little impact on the perceived effectiveness. Efforts to improve public understanding of research are needed to improve the understanding of evidence-based health information.Trial RegistrationGerman Clinical Trials Register DRKS00015911, https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00015911International Registered Report Identifier (IRRID)RR2-10.2196/13425

COVID-19 Consumer Health Information Needs Improvement to Be Readable and Actionable by High-Risk Populations

Health communicators help promote recommended health behaviors by providing accurate, actionable health information that is easy to read and understand. The COVID-19 public health crisis presents a special challenge to clear health communication because the populations most affected by the virus are those at risk for limited health literacy. We collected 28 consumer COVID-19 materials from the internet using popular search engines. We then assessed the materials for readability, understandability, and actionability using validated tools. Aggregate results suggest that the sample of materials was difficult to read and lacked a number of recommended features that promote a readers’ ability to understand and act upon the information. We present these findings, their implications for health equity, and their limitations and then suggest ways to improve future health communication about time-sensitive infectious diseases.

Evaluation of information quality on the internet for periodontal disease patients.

To evaluate the quality of accessible information on periodontal diseases on the Internet using different scales. A search was performed using the Google search engine with questions about periodontal disease symptoms. The first 30 web sites obtained after searching for each question were evaluated. Duplicate web sites, advertisements, discussion groups, links to research articles, videos, and images were excluded. A total of 90 web sites were included and evaluated with Health on the Net Code of Conduct Certification (HONCode) presence, Journal of American Medical Association (JAMA) benchmarks, and the quality criteria for consumer health information (DISCERN) toolkit. Only 27.8% of the analyzed web sites contain HONCode certificates. No webpages fulfilled all JAMA criteria, whereas 32.2% of the web sites did not provide any of them. Majority of the web sites' (44.4%) overall rating score was 2 with the DISCERN instrument. In the DISCERN Section Scores comparison between various types of web sites, information web site scores were higher than Dental Health Center Web sites in Section 1 and Section 3 scores (p=.000 and p=.001, respectively). Overall quality of periodontal information based on patients' questions on the Internet has serious shortcomings especially in terms of attribution and the quality of information on treatment choices.

Developing an Education Pathway for Breast Cancer Patients Receiving Rapid Diagnostic Testing: Investigating Informational and Supportive Care Needs.

Several studies have examined the informational needs of patients undergoing the breast diagnostic process where needs are highest during testing and prior to receiving a diagnosis. To aid in the development of an education pathway, we identified patient information needs. A multi-method approach to identify areas of need and to understand when and how information should be provided to patients was undertaken. The methods included an environmental scan of consumer health information, ethnographic observation of the patient clinical experience, key informant interviews, and a needs assessment survey. The data collected from the environmental scan, ethnography, and interviews were used to develop the items in the survey. The survey was developed around four domains: (1) Medical Procedures and Tests, (2) Understanding the Rapid Diagnostic Process, (3) Breast Cancer and Other Breast Conditions, and (4) Support and Coping. A total of 101 patients completed the survey. Mean importance scores were significantly different between domains of information need (p < .0001) and significantly higher for the 'Medical Procedures and Tests' domain compared with all others. Multivariate analysis suggested that participants with higher levels of education (p = .02) and a preference to speak English at home (p = .009) tended to rate the importance of 'Support and Coping' information lower than other participants. Information about medical procedures and tests are most important for the patients undergoing rapid diagnostic testing in our sample. Education materials that are tailored to patient needs should be provided to patients during this stage of the cancer journey to help meet informational needs.

Googling migraine: A study of Google as an information resource of migraine management.

Health information is one of the most frequently searched topics on the internet. In this observational cross-sectional study, we evaluated the content of the highest indexed Google search results related to migraine management. We identified the five most used search terms related to migraine management via Google Trends in the time period 1 January 2004 to 2 October 2019. We entered each search term into Google's search engine and retrieved the search results from the first three pages from each search query. We stratified the recommended treatment options and evaluated the websites using the DISCERN tool. In total, 73 unique websites recommended a total of 77 different migraine treatment options, consisting of 35 (45%) acute and 42 (55%) preventive treatments. For acute treatments, pharmacological options were more frequently recommended (88% of websites), whereas non-pharmacological options were more frequent among preventive treatments (67%). Evaluation of the consumer health information using the DISCERN tool showed that non-governmental organizations had the highest mean total score with 3.8 (±0.19). Googling when looking for migraine treatments reveals a multitude of management proposals of varying quality. Non-governmental organizations provide the overall highest quality of written consumer health information on migraine treatments among search results. We encourage stakeholders to optimize and distribute high-quality and peer-reviewed information on migraine management.

How refugee youth use social media: what does this mean for improving their health and welfare?

How do refugee youth use social media and Information and Communication Technologies (ICTs)? Is ICT use relevant to refugee health and well-being? We conducted a systematic scoping review to identify current social media use behaviors. We examined impacts of social media and information sharing applications on health, well-being, inclusion, and integration of refugees into host countries. Review findings reveal that refugee youth commonly use ICTs for social networking, presentation of self, health information consumption, and political rights. Studies suggest that uptake of social media through personal mobile devices, such as smartphones, positively enhanced interactions of newly arrived refugees. Our review identifies policy opportunities to enable social media to facilitate delivery of resettlement and health information, to foster integration for refugees, and to improve their health.

Evaluation of quality and reliability of YouTube videos on spondylolisthesis

BackgroundYouTube is the most popular and the largest video portal and is a source of information in all areas. In our study, we aim to investigate the quality of videos on spondylolisthesis in the YouTube video portal and to detail the parameters for low-quality videos. Material and methodsA search was made by using keyword “spondylolisthesis” on the YouTube search portal. 50 most watched videos were included in the study. The duration of the videos, view counts, like counts, dislike counts, number of comments, the date the video was published, and the video's release time were noted. Popularity of the video is determined by Video Power Index (VPI) and video quality is evaluated with DISCERN (Quality Criteria for Consumer Health Information), JAMA (Journal of the American Medical Association), and Global Quality Score (GQS) scoring systems. Video content was categorized as physician and non-physician, video length, release date, view count, daily view count, VPI, comments/year. The relationship between the groups and video quality was evaluated. ResultsVideo uploaders consist of 27 physicians (54%), 7 health channels, 6 physiotherapists, 4 patients, 4 hospital channels, 1 chiropractic, 1 fitness coach. The mean JAMA score was 2.7 ± 0.6 (1–4), the mean DISCERN score was 35 ± 11.1 (16–64) and the mean GQS score was 2.84 ± 1.05. DISCERN, JAMA, and GQS scores correlate among themselves. In linear regression analysis, there was a significant difference between the duration of the videos, the view counts and the video quality scores (DISCERN and JAMA) (p < 0.05), no significant difference was observed between the daily view counts, like counts, dislike counts, VPI and comment count (p > 0.05). ConclusionThe video quality of videos on Spondylolisthesis on YouTube was found to be low. Especially videos by non-physician uploaders, short videos, most viewed videos were found to have low quality.

Positioning Libraries in Meeting Public Health Challenges in India: Key Strategies

Worldwide there has been tremendous development in the field of public health. That includes dissemination of relevant information to the public at large, by different means. In developed countries, the governments have been proactive in health care provisions and health care services delivery to its people. Librarians’ roles and responsibilities are also embedded in such a system. Consequently, library professionals are actively engaged in providing information resources to the community they serve. But in the developing countries, such initiative to meet health care demands of large populations is often less responsive and resources successfully reaching the communities is uneven. Librarians occupy a relatively small space in health care delivery systems, especially in providing health information to diverse communities. In India too, the picture is grim as far as librarians’ involvement as facilitator of health information to communities is concerned. In this context, considering counties demography and socio-economic status, relevant literature on role of libraries in provision of consumer health information was reviewed. Based on published research, this paper articulates key strategies that will assist librarians in providing health information services to various communities in India.Given the prevailing Covid-19 health crisis, this paper also identifies major challenges and possible solutions for strengthening libraries, that would help in mitigating public health challenges in India.

Exploring Affordable Care Act and Health Insurance Information Seeking with Google Trends

Objective: This study investigates how Google searches for health insurance and Affordable Care Act (ACA) information vary over time, specifically the time leading up to a presidential election, and whether they vary geographically by states’ political voting patterns.Methods: Google Trends data from 2009 to 2017 were captured for the terms: Obamacare, Affordable Care Act, ACA, and health insurance.Results: The results demonstrate searches for Obamacare were higher during election periods and that searches vary geographically by the political affiliation of the presidential candidate elected in each state.Conclusions: Differences in search terms lead to differences in search results, meaning that some geographic areas are more likely to locate less authoritative information, which in turn may affect their opinions concerning health care reform. Considering the growing number of people who consult Google for information, it is important to explore how Google search outcomes can impact the consumer health information that is being located and consumed.

COVID-19 Patient Education and Consumer Health Information Resources and Services

The health information needs of providers, patients, and consumers are continually evolving in response to the spread of COVID-19. Information professionals play key roles in counteracting the associated dangerous impact of misinformation, the digital divide, low health literacy, and information overload. Librarians can contribute to the fight against COVID-19 through collating reliable, up-to-date, and inclusive resources; triaging evidence; creating “stop-gap” collections; promoting credible sources; and through health literacy training. This column therefore focuses on pandemic information services for patient education and consumer health, while also discussing librarians’ dual roles as information providers and community advocates during the time of COVID-19.