Too Complex, Too Unreliable: Gaps in the Quality of Online Health Information for Adults with ADHD

Generalized pustular psoriasis (GPP) is a multisystem disease with potentially life-threatening adverse effects. As patients increasingly seek health information online, and as the landscape for GPP changes, the quality of online health information (OHI) becomes progressively more important. This paper is the first of its kind to examine the quality, comprehensiveness and readability of online health information for GPP. Similar to pre-existing studies evaluating OHI, this paper examines 5 key search terms for GPP- 3 medical and 2 laymen. For each search term, the results were evaluated based on HONcode accreditation, an enhanced DISCERN analysis and a number of readability indices. Of the 500 websites evaluated, 84 (16.8%) were HONcode-accredited. Mean DISCERN scores of all websites were 74.9% and 38.6% for website reliability and treatment sections, respectively, demonstrating key gaps in comprehensiveness and reliability of GPP-specific OHI. Additionally, only 4/100 websites (4%) analysed for readability were written at the NIH-recommended sixth-grade level. Academic websites were significantly more difficult to read than governmental websites. This further exacerbates the patient information gap, particularly for patients with low health literacy, who may already be at higher risk of not receiving timely medical care.

Trust, authority and credibility in the digital environment have attracted the interest of many researchers in the recent years. Reliable and credible information are key factors for making numerous decisions in our everyday lives, from making political choices to choosing a healthy lifestyle. Various health-related narratives are present in the public sphere. Health advice and recommendations on vaccination, antibiotics, nutrition, exercise and numerous other topics are provided by different sources, scientific community, healthcare professionals, media, lay people, patients, social networks, etc. It was the infodemic associated with the coronavirus pandemic that again brought to the forefront the importance of reliable and credible health information and health information literacy in this complex digital environment. In such fragmented information ecosystem, characterized by the post-truth era, where misinformation and fake news spread by uninformed individuals or advocates of various conspiracy theories are considered equivalent to reliable scientific information, individuals have to choose whom to trust, based on their critical capacities and competencies, in order to make health decisions for themselves and their families. The young people of today, especially those born after the year 2000, represent the generation of digital natives, who grew up and spent their entire lives surrounded by digital technologies that have become an integral part of their lives. They think and process information differently than their predecessors. Most of them use the Internet as their primary source for accessing information, most often through smartphones, spend the vast majority of time online, increasingly use social networks for private and professional purposes, but at the same time have difficulty assessing the reliability of online information. The way they assess trust in digital information is different from the way they question information credibility in traditional media. Given that trust and credibility of information strongly influence the effect of information message itself, which, in extraordinary circumstances and public health crisis such as the coronavirus pandemic, is of vital importance for the lives of people, it is very important to understand how users decide whom to trust. Health information literacy is a multidimensional and dynamic concept that incorporates social, cognitive, economic, and personal skills to search, understand, and use health information in order to improve and maintain good health. The evaluation of online health information, i.e. its reliability and credibility, plays a significant role in the process of health behavior change. Research to date has not reached a consensus on unique framework for understanding the process of building user confidence in online health information. The focus of this doctoral dissertation are theoretical and analytical challenges of health information literacy as a multidimensional and dynamic concept, particularly in understanding the process of creating trust in online health information. By examining the attitudes and opinions of medical students about the evaluation of online health information we aimed to determine factors that influence the assessment of health information quality and credibility. The main research objective is to examine the element of information appraisal in the concept of health information literacy and to determine the processes of creating trust in health information in an online environment. The specific research objectives are as follows: 1. to identify factors and techniques for assessing the quality, reliability and credibility of online health information; 2. to determine the elements of cognitive heuristics for assessing the reliability of online health information; 3. to determine the impact of infodemic during a healthcare crisis on online health information trust issues; 4. to examine methods for assessing the quality and reliability of user-generated online health information; 5. to investigate medical students' attitudes and knowledge of the concepts and tools for assessing health information literacy. Our research aimed to determine common elements of information appraisal in the concept of health information literacy and related concepts dealing with online health information (health literacy, information literacy, media literacy, digital literacy, etc.). The research was performed using multiple methods conducted in three phases: 1. literature review and comparative analysis of selected tools and instruments for assessment of health information literacy and related concepts; 2. a survey questionnaire that examined the attitudes and opinions of medical students of the University of Zagreb School of Medicine regarding online health information appraisal, and 3. semi-structured interviews with a smaller subgroup of respondents in order to build on the findings from the survey questionnaire related to the determination of factors that influence trust in online health information, i.e. assessment of their quality and credibility. The results of our research demonstrated that medical students have the knowledge, skills and techniques necessary to assess the quality, reliability and credibility of online health information. Although medical students generally considered Internet to be a questionable source for health information, the majority reported that they always use online search engines as the first step when searching for health topics, regardless of their purpose (general interest, academic assignment, or personal or health problem among family and friends, etc.). Medical students consider the following analytical criteria when assessing the credibility of online health information: trustworthiness, completeness, objectivity and comprehensiveness of information, referencing other data sources and author disclosure. Apart from analytical criteria, medical students also use cognitive heuristics when assessing the reliability of online health information, especially user-generated content that is published and shared via social networks. Students also emphasized the importance of critical thinking, factual analysis, information verification on multiple sources, determination of source credentials as well as sharing information with family members, friends, colleagues, physicians and university professors who they consider as cognitive authorities in health communication. Research results indicate an overall positive relationship between perceived health information literacy of medical students, their ability to evaluate online health information and trust in the Internet as a source of health information. Students with high self-perceived level of e-health literacy more often use websites of government institutions and professional medical associations than other sources for online health information. Our research also revealed that the degree of trust that medical students have in online sources of information affects their behavior when searching and evaluating online health information. In healthcare crisis situations, medical students apply additional evaluation criteria for usergenerated health information on social media. In general, medical students expressed mistrust towards social networks, especially as a source of credible health information in the context of an infodemic. Although the majority of students use social networks only passively, they also believe that social networks present a platform that has the potential, if used appropriately, to convey reliable information and improve health information literacy. Students also stressed that, during infodemic, strategic crisis communication skills should be applied for proactive dissemination of credible, factual and scientific evidence in order to contribute to a faster and more efficient containment of the spread of misinformation and fake news on social media. The results of our research have shown that online health information should be comprehensive, accurate, evidence-based, objective and up-to-date in order to convey a quality health message. According to medical students, quality of information, source credibility, comprehensibility and readability, as well as verification of information in evidence-based sources are main predictors of trust in online health information. Understanding which health channels and sources are considered most reliable among different user groups can help health professionals reach at-risk patients in order to communicate health messages more successfully and implement interventions aimed at strengthening skills that are important for health information appraisal. By analyzing medical students` attitudes and opinions about credibility of online health information, we explored ways to promote critical thinking in the digital environment in order to empower individuals to make decisions in their everyday life based on verified and credible sources of information. Placing greater emphasis on lifelong learning about health, and formal and informal health information literacy education, enables greater autonomy and empowerment of individuals, and can be viewed as part of personal development towards an improved quality of life. Health information literacy increases individual and community resistance to harmful and misleading information and reduces the impact of the infodemic on human health. Improving health information literacy among population requires joint action and cooperation between stakeholders and policymakers (government authorities, media, scientific, educational and health institutions, healthcare professionals, scientists, researchers, librarians and others). Health information literacy is an important competence of every individual, but its implications for society are much broader. They include personal and social responsibility of individuals and taking ethical actions for the benefit of the community. A modern democratic society implies engaged citizens who autonomously reflect on political, ethical and social challenges in everyday life. Empowerment in health and social care, achieved by developing critical competencies, helps in distancing oneself from various social pressures, making independent informed decisions and taking responsibility for one's own health. Croatia, unlike most other European countries, still does not have an official strategy or action plan for developing and improving health information literacy among its population. Our research results point out the importance of including health information literacy in the national health policy and education strategy, with particular emphasis on developing critical thinking skills and competencies in evidence-based approach to online health information appraisal. The results of this research contribute to the conceptual linking of theoretical constructs on information appraisal and critical theories from information and communication sciences with constructs from the field of public health. The mentioned approach resulted in unifying the narratives of different domains, and synthesizing separate theoretical frameworks, namely health information and related literacies, which adds to the value of this research. The results of this research serve as a basis for defining skills for critical appraisal of online health information in order to increase the level of health information literacy and development of tools for evaluating the reliability of online health information. On the applicative level, this doctoral dissertation provides recommendations for communication of reliable online health information from the current infodemic perspective, in planning public health activities and interventions in the future.

BackgroundPeople increasingly use the Internet to seek health information. However, the overall quality of online health information remains low. This situation is exacerbated by the unprecedented “infodemic”, which has had negative consequences for patients. Therefore, it is important to understand how users make judgements about health information by applying different judgement criteria.ObjectiveThe objective of this study is to determine how patients apply different criteria in their judgement of the quality of online health information during the pandemic. In particular, we investigate whether there is consistency between the likelihood of using a particular judgement criterion and its perceived importance among different groups of users.MethodsA cross-sectional survey was conducted in one of the leading hospitals in a coastal province of China with a population of forty million. Combined-strategy sampling was used to balance the randomness and the practicality of the recruiting process. A total of 1063 patients were recruited for this study. Chi-square and Kruskal–Wallis analyses were used to analyse the survey data.ResultsIn general, patients make quality judgement of health information more frequently based on whether it is familiar, aesthetic, and with expertise. In comparison, they put more weights on whether health information is secure, trustworthy, and with expertise when determining its quality. Criteria that were considered more important were not always those with a higher likelihood of being used. Patients may not use particular criteria, such as familiarity, identification, and readability, more frequently than others even if they consider them to be more important than other do and vice versa. Surprisingly, patients with a primary school degree put more weight on whether health information is comprehensive than those with higher degrees do in determining its quality. However, they are less likely to use this guideline in practice.ConclusionsTo the best of our knowledge, this is the first study to investigate the consistency between the likelihood of using certain quality judgement criteria and their perceived importance among patients grouped by different demographic variables and eHealth literacy levels. The findings highlight how to improve online health information services and provide fine-grained customization of information for users.

Patients and parents increasingly rely on the internet to obtain medical information. The readability of these online webpages is significant, as lower literacy rates have been associated with poorer health outcomes. As such, the American Medical Association (AMA) and National Institutes of Health (NIH) recommend that health information be written between a 6th- and 8th-grade reading level. This study aimed to evaluate the readability and quality of online webpages discussing hemifacial microsomia (HFM). Three of the largest online search engines were queried by 2 independent reviewers for "hemifacial microsomia." Readability was assessed using 6 readability tests: Flesch Reading Ease Score (FRES), Flesch-Kincaid Grade Level (FKGL), Gunning Fog Index (GFI), Simple Measure of Gobbledygook (SMOG) Index, Coleman-Liau Index (CLI), and Automated Readability Index (ARI). The quality of online webpages was assessed using the DISCERN handbook and scale. Thirteen webpages were included for analysis. The mean overall readability level was equivalent to a 13th-grade level. The mean readability grade level for each score used was: FKGL 12.4, GFI 15.7, SMOG Index 11.3, CLI 14.1, and ARI 13.2. The FRES was 36.8 (ie, difficult to read). Online webpages providing information regarding HFM are too difficult for most Americans to read. The readability of online patient information should be a priority for health care providers and medical organizations that publish this information. By improving the readability and quality of online health information, patients and caregivers will better understand their condition, effectively encouraging active participation in the shared decision-making process.

Background and aimsSystemic lupus erythematosus (SLE) is a complex multi-system autoimmune disorder. Patients frequently access the internet to increase their knowledge about the condition.We assessed the quality, reliability and readability...

International assessment on quality and content of internet information on osteoarthritis

The Internet has become a leading source of health information accessed by patients and the general public. It is crucial that this information is reliable and accurate. The purpose of this systematic review was to evaluate the overall quality of online health information targeting patients and the general public. The systematic review is based on a pre-established protocol and is reported according to the PRISMA statement. Eleven databases and Internet searches were performed for relevant studies. Descriptive statistics were used to synthesize data. The NIH Quality Assessment Tool for Observational Cohort and Cross-Sectional Studies was used to assess the methodological quality of the included studies. Out of 3393 references, we included 153 cross-sectional studies evaluating 11,785 websites using 14 quality assessment tools. The quality level varied across scales. Using DISCERN, none of the websites received a category of excellent in quality, 37-79% were rated as good, and the rest were rated as poor quality. Only 18% of websites were HON Code certified. Quality varied by affiliation (governmental was higher than academic, which was higher than other media sources) and by health specialty (likely higher in internal medicine and anesthesiology). This comprehensive systematic review demonstrated suboptimal quality of online health information. Therefore, the Internet at the present time does not provide reliable health information for laypersons. The quality of online health information requires significant improvement which should be a mandate for policymakers and private and public organizations.

BackgroundRecent years have witnessed a dramatic increase in consumer online health information seeking. The quality of online health information, however, remains questionable. The issue of information evaluation has become a hot topic, leading to the development of guidelines and checklists to design high-quality online health information. However, little attention has been devoted to how consumers, in particular people with low health literacy, evaluate online health information.ObjectiveThe main aim of this study was to review existing evidence on the association between low health literacy and (1) people’s ability to evaluate online health information, (2) perceived quality of online health information, (3) trust in online health information, and (4) use of evaluation criteria for online health information.MethodsFive academic databases (MEDLINE, PsycINFO, Web of Science, CINAHL, and Communication and Mass-media Complete) were systematically searched. We included peer-reviewed publications investigating differences in the evaluation of online information between people with different health literacy levels.ResultsAfter abstract and full-text screening, 38 articles were included in the review. Only four studies investigated the specific role of low health literacy in the evaluation of online health information. The other studies examined the association between educational level or other skills-based proxies for health literacy, such as general literacy, and outcomes. Results indicate that low health literacy (and related skills) are negatively related to the ability to evaluate online health information and trust in online health information. Evidence on the association with perceived quality of online health information and use of evaluation criteria is inconclusive.ConclusionsThe findings indicate that low health literacy (and related skills) play a role in the evaluation of online health information. This topic is therefore worth more scholarly attention. Based on the results of this review, future research in this field should (1) specifically focus on health literacy, (2) devote more attention to the identification of the different criteria people use to evaluate online health information, (3) develop shared definitions and measures for the most commonly used outcomes in the field of evaluation of online health information, and (4) assess the relationship between the different evaluative dimensions and the role played by health literacy in shaping their interplay.

The opioid crisis in the US remains a critical public health issue. Accessible, high-quality online health information is vital for educating the public about opioid use disorder (OUD) and available treatment options. This study aims to evaluate and compare the readability, accessibility, and quality of OUD-related information on government and non-government websites to identify areas for improvement. A total of 30 websites, 21 government-operated and 9 non-governmental, were selected through a systematic search. Readability was assessed using Gunning Fog, Simple Measure of Gobbledygook (SMOG), and Flesch Reading Ease Score (FRES) tests. Accessibility was evaluated using the WAVE tool, which checks for errors and adherence to Web Content Accessibility Guidelines (WCAG). Quality was measured using the DISCERN Instrument, a standardized tool for evaluating the quality of health information. Data were analyzed for statistical differences between government and non-government websites. The average readability grade level across all websites was 14.63 and average FRES score was 31.63, indicating content requiring advanced reading skills, with no significant difference between government and non-government websites. Accessibility issues were more prevalent on non-government websites. Government websites scored significantly lower in terms of quality, with 80.95% of them rated as "poor" or "very poor" compared with 22.22% of non-government websites. The overall quality scores for both groups remained suboptimal, with an average DISCERN score of 39.52 out of 80. The findings highlight a critical need for improvements in the readability, accessibility, and quality of online health information on OUD. Government websites, in particular, require enhancements to ensure they meet the public's need for reliable, accessible, and comprehensible health resources.

Currently, patients use the Internet for health information relating to surgery. The aim of this study is to assess the readability and quality of online health information relating to acromioclavicular joint reconstruction. We hypothesise that the information will be of poor quality and be too difficult to read for the average patient. The top 50 results from Google, Bing, and Yahoo (MeSH “acromioclavicular joint reconstruction”, “ac joint reconstruction”) were used for analysis. Readability was assessed using three scores (Gunning FOG (GF), Flesch–Kincaid Grade (FKG), and Flesch Reading Ease (FRE)); these scores were generated using an online calculator (www.readable.com). Quality was assessed using a HONcode Google Toolbar extension and JAMA benchmark criteria. One hundred sixteen webpages were subject to analysis. The mean GF was 12.1 ± 2.9. The mean FKG was 10.6 ± 2.15. The mean FRE was 38.9 ± 13.3. FRE score found no webpage pitched at the 6th grade level, and only 4 (3.4%) and 2 (1.7%) of the webpages were pitched at this level according to the GF and FKG scores, respectively. The mean JAMA score was 1.9 ± 1.5. Only 10 webpages had HONcode certification. The quality of online patient information pertaining to acromioclavicular joint reconstruction is of poor quality and is too difficult to read. Physicians and health information providers should conform to health literacy standards. Health information providers should meet the minimum standards of verified assessment tools.

BackgroundAs the quality of online health information remains questionable, there is a pressing need to understand how consumers evaluate this information. Past reviews identified content-, source-, and individual-related factors that influence consumer judgment in this area. However, systematic knowledge concerning the evaluation process, that is, why and how these factors influence the evaluation behavior, is lacking.ObjectiveThis review aims (1) to identify criteria (rules that reflect notions of value and worth) that consumers use to evaluate the quality of online health information and the indicators (properties of information objects to which criteria are applied to form judgments) they use to support the evaluation in order to achieve a better understanding of the process of information quality evaluation and (2) to explicate the relationship between indicators and criteria to provide clear guidelines for designers of consumer health information systems.MethodsA systematic literature search was performed in seven digital reference databases including Medicine, Psychology, Communication, and Library and Information Science to identify empirical studies that report how consumers directly and explicitly describe their evaluation of online health information quality. Thirty-seven articles met the inclusion criteria. A qualitative content analysis was performed to identify quality evaluation criteria, indicators, and their relationships.ResultsWe identified 25 criteria and 165 indicators. The most widely reported criteria used by consumers were trustworthiness, expertise, and objectivity. The indicators were related to source, content, and design. Among them, 114 were positive indicators (entailing positive quality judgments), 35 were negative indicators (entailing negative judgments), and 16 indicators had both positive and negative quality influence, depending on contextual factors (eg, source and individual differences) and criteria applied. The most widely reported indicators were site owners/sponsors; consensus among multiple sources; characteristics of writing and language; advertisements; content authorship; and interface design.ConclusionsConsumer evaluation of online health information is a complex cost-benefit analysis process that involves the use of a wide range of criteria and a much wider range of quality indicators. There are commonalities in the use of criteria across user groups and source types, but the differences are hard to ignore. Evidently, consumers’ health information evaluation can be characterized as highly subjective and contextualized, and sometimes, misinformed. These findings invite more research into how different user groups evaluate different types of online sources and a personalized approach to educate users about evaluating online health information quality.

The Internet has become a favored source to find health information. Worldwide, about 4.5% of all Internet searches are for health-related information. However, research has found that the quality of online health information is mixed, which raises serious concerns about the impact of this information. This paper reviews relevant research to understand how health information on the Internet is retrieved, evaluated, and used. Most users of online health information are looking for information about specific health conditions because they or someone they know was diagnosed with a medical condition. They typically use general search engines to find online health information and enter short phrases, often misspelled. They seldom go beyond the first page of a search. Both their search and evaluation skills are limited although they are concerned about the quality of online health information. They avoid sites with overt commercialism, but often do not pay attention to indicators of credibility. Online health information is used to fill an information void which can enhance coping and self efficacy, affects health-related decisions and behavior of users and their friends and family, and is often discussed with health care providers. There are cross-cultural differences in the types of sites used as well as how online information is used. Based on the research reviewed in this paper, three major recommendations are suggested. Professionals should recommend sites. Professionals should promote more effective search and evaluation techniques. Professionals should be involved in developing and promoting uniform standards for health and mental health sites.

Although much is known about the quality of online health information (OHI) for many malignancies, the availability of high-quality OHI for oncologic treatments remains undefined. Furthermore, search strategies that improve quality of radiation oncology OHI, and disparities in availability of high-quality OHI, are not well-described. Forty phrases describing malignancies and their treatment modalities (radiation, chemotherapy, and surgery), and 57 phrases describing radiation oncology treatments, including abbreviations for some treatments and translations in different languages, were generated. The Health on the Net Foundation framework for assessing OHI quality was applied to the top 100 websites listed for each search phrase. The availability of high-quality OHI between malignancies and treatment modalities, and among treatment modalities, was compared. The roles of radiation oncology term abbreviation, search result order, patient gender, and language, on availability of high-quality OHI, were also assessed. Among the first 10, 20, and 50 websites for each search phrase, there were significantly more high-quality websites for phrases describing malignancies compared with respective treatment modalities (P < 0.02 for all). There were no differences among treatment modalities. Among radiation oncology treatment phrases, there were no significant differences between searches for full-name phrases and their respective abbreviations, though earlier results were more likely to be of high quality. Gender did not affect quality of OHI, though language did. Availability of high-quality OHI for cancer treatments lags behind that of cancer OHI. For radiation oncology treatment OHI, search strategies and patient disparities highlight potential areas for provider intervention and increased quality of OHI.

Complications of parotidectomy can have a massive impact on patients' quality of life. This study aimed to evaluate the readability and quality of online health information on parotidectomy. The search terms 'parotidectomy', 'parotid surgery', 'parotidectomy patient information' and 'parotid surgery patient information' were parsed through three popular search engines. The websites were analysed using readability scores of the Flesch Reading Ease test and the Gunning Fog Index. The DISCERN instrument was used to assess quality and reliability. The average Flesch Reading Ease score was 50.2 ± 9.0, indicating that the materials were fairly difficult to read, the Gunning Fog Index score showed that the patient health information was suitable for an individual above 12th grade level, and the DISCERN score indicated that the online patient health information had fair quality. The Kruskal-Wallis test showed a significant difference in Flesch Reading Ease and DISCERN tool scores according to website category (p < 0.05). Current online patient health information on parotidectomy is too difficult for the public to understand, and it exceeds the reading levels recommended by Health Education England and the American Medical Association.

Both the Internet and social media have become important tools that patients and health professionals, including health professional students, use to obtain information and support their decision-making surrounding health care. Students in the health sciences require increased competence to select, appraise, and use online sources to adequately educate and support patients and advocate for patient needs and best practices. The purpose of this study was to ascertain if second year nursing students have the ability to critically identify and evaluate the quality of online health information through comparisons between student and expert assessments of selected online health information postings using an adapted Trust in Online Health Information scale. Interviews with experts provided understanding of how experts applied the selected criteria and what experts recommend for implementing nursing informatics literacy in curriculums. The difference between student and expert assessments of the quality of the online information is on average close to 40%. Themes from the interviews highlighted several possible factors that may influence informatics competency levels in students, specifically regarding the critical appraisal of the quality of online health information.