Factors Influencing Willingness to Share Health Misinformation Videos on the Internet: Web-Based Survey.

BACKGROUND: The rapidly evolving digital environment of the social media era has increased the reach of both quality health information and misinformation. Platforms such as YouTube enable easy sharing of attractive, if not always evidence-based, videos with large personal networks and the public. Although much research has focused on characterizing health misinformation on the internet, it has not sufficiently focused on describing and measuring individuals' information competencies that build resilience. OBJECTIVE: This study aims to assess individuals' willingness to share a non-evidence-based YouTube video about strengthening the immune system; to describe types of evidence that individuals view as supportive of the claim by the video; and to relate information-sharing behavior to several information competencies, namely, information literacy, science literacy, knowledge of the immune system, interpersonal trust, and trust in health authority. METHODS: A web-based survey methodology with 150 individuals across the United States was used. Participants were asked to watch a YouTube excerpt from a morning TV show featuring a wellness pharmacy representative promoting an immunity-boosting dietary supplement produced by his company; answer questions about the video and report whether they would share it with a cousin who was frequently sick; and complete instruments pertaining to the information competencies outlined in the objectives. RESULTS: Most participants (105/150, 70%) said that they would share the video with their cousins. Their confidence in the supplement would be further boosted by a friend's recommendations, positive reviews on a crowdsourcing website, and statements of uncited effectiveness studies on the producer's website. Although all information literacy competencies analyzed in this study had a statistically significant relationship with the outcome, each competency was also highly correlated with the others. Information literacy and interpersonal trust independently predicted the largest amount of variance in the intention to share the video (17% and 16%, respectively). Interpersonal trust was negatively related to the willingness to share the video. Science literacy explained 7% of the variance. CONCLUSIONS: People are vulnerable to web-based misinformation and are likely to propagate it on the internet. Information literacy and science literacy are associated with less vulnerability to misinformation and a lower propensity to spread it. Of the two, information literacy holds a greater promise as an intervention target. Understanding the role of different kinds of trust in information sharing merits further research.

Behavioral Interventions Using Consumer Information Technology as Tools to Advance Health Equity.

The digital divide related to consumer information technologies (CITs) has diminished, thus increasing the potential to use CITs to overcome barriers of access to health interventions as well as to deliver interventions situated in the context of daily lives. However, the evidence base regarding the use and impact of CIT-enabled interventions in health disparity populations lags behind that for the general population. Literature and case examples are summarized to demonstrate the use of mHealth, telehealth, and social media as behavioral intervention platforms in health disparity populations, identify challenges to achieving their use, describe strategies for overcoming the challenges, and recommend future directions. The evidence base is emerging. However, challenges in design, implementation, and evaluation must be addressed for the promise to be fulfilled. Future directions include (1) improved design methods, (2) enhanced research reporting, (3) advancement of multilevel interventions, (4) rigorous evaluation, (5) efforts to address privacy concerns, and (6) inclusive design and implementation decisions.

Evaluating the Quality of Health Information in a Changing Digital Ecosystem.

BACKGROUND: Critical evaluation of online health information has always been central to consumer health informatics. However, with the emergence of new Web media platforms and the ubiquity of social media, the issue has taken on a new dimension and urgency. At the same time, many established existing information quality evaluation guidelines address information characteristics other than the content (eg, authority and currency), target information creators rather than users as their main audience, or do not address information presented via novel Web technologies. OBJECTIVE: The aim of this formative study was to (1) develop a methodological approach for analyzing health-related Web pages and (2) apply it to a set of relevant Web pages. METHODS: This qualitative study analyzed 25 type 2 diabetes pages, which were derived from the results of a Google search with the keywords "diabetes," "reversal," and "natural." The coding scheme, developed via a combination of theory- and data-driven approaches, includes 5 categories from existing guidelines (resource type, information authority, validity of background information sources, objectivity, and currency) and 7 novel categories (treatment or reversal method, promises and certainty, criticisms of establishment, emotional appeal, vocabulary, rhetoric and presentation, and use of science in argumentation). The coding involves both categorical judgment and in-depth narrative characterization. On establishing satisfactory level of agreement on the narrative coding, the team coded the complete dataset of 25 pages. RESULTS: The results set included "traditional" static pages, videos, and digitized versions of printed newspapers or magazine articles. Treatments proposed by the pages included a mixture of conventional evidence-based treatments (eg, healthy balanced diet exercise) and unconventional treatments (eg, dietary supplements, optimizing gut flora). Most pages either promised or strongly implied high likelihood of complete recovery. Pages varied greatly with respect to the authors' stated background and credentials as well as the information sources they referenced or mentioned. The majority included criticisms of the traditional health care establishment. Many sold commercial products ranging from dietary supplements to books. The pages frequently used colloquial language. A significant number included emotional personal anecdotes, made positive mentions of the word cure, and included references to nature as a positive healing force. Most pages presented some biological explanations of their proposed treatments. Some of the explanations involved the level of complexity well beyond the level of an educated layperson. CONCLUSIONS: Both traditional and data-driven categories of codes used in this work yielded insights about the resources and highlighted challenges faced by their users. This exploratory study underscores the challenges of consumer health information seeking and the importance of developing support tools that would help users seek, evaluate, and analyze information in the changing digital ecosystem.

Lessons learned from multisite implementation and evaluation of Project SHARE, a teen health information literacy, empowerment, and leadership program.

BACKGROUND: This case study describes the implementation and evaluation of a multisite teen health information outreach program. The objectives of the program were to increase health knowledge, health information literacy, interest in health careers, community engagement, and leadership skills of teens in disadvantaged communities. CASE PRESENTATION: Teens at six sites across the country participated in a multi-week curriculum that focused on various aspects of health literacy, information literacy, and leadership. Lesson topics addressed personal health, social determinants of health, information quality, and communication and advocacy skills. Program evaluation included both quantitative and qualitative components and focused on multiple knowledge and skills outcome variables. Results suggested that while teens at all sites showed improvement, particularly with respect to engagement and interest in the topics, the degree of gains in knowledge and information literacy measures varied significantly from site to site. CONCLUSION: On-site implementation planning, cohesive integration of added activities, and emphasis on retention can contribute to implementation and evaluation effectiveness. This work also underscores the limitation of a purely quantitative approach to capturing the impact of health information and stresses the importance of supplementing numerical scores and statistics with qualitative data.

Evaluation of a health sciences internship for Latino and Native American library students.

PURPOSE: This paper presents a qualitative evaluation of a graduate-level internship for Latino and Native American library science students or students who are interested in serving those populations. METHODS: The authors analyzed semi-structured interviews with thirteen internship program graduates or participants. RESULTS: The analysis suggests that the program increased participants' interest in health sciences librarianship and led to improved career opportunities, both in health sciences libraries and other libraries with health information programming. It also highlights specific factors that are likely to contribute to the strength of career pipeline programs aiming to bring Latino and Native American students and students who are interested in serving those communities into health librarianship. CONCLUSIONS: Exposing graduate-level interns to a broad range of health sciences librarianship tasks, including outreach to Latino and Native American communities and formal mentorship, is likely to maximize interns' interests in both health sciences librarianship and service to these communities.

Harnessing health information to foster disadvantaged teens' community engagement, leadership skills, and career plans: a qualitative evaluation of the Teen Health Leadership Program.

This paper describes a qualitative evaluation of a small-scale program aiming to improve health information literacy, leadership skills, and interest in health careers among high school students in a low-income, primarily minority community. Graduates participated in semi-structured interviews, transcripts of which were coded with a combination of objectives-driven and data-driven categories. The program had a positive impact on the participants' health information competency, leadership skills, academic orientation, and interest in health careers. Program enablers included a supportive network of adults, novel experiences, and strong mentorship. The study suggests that health information can provide a powerful context for enabling disadvantaged students' community engagement and academic success.

Library workers' personal beliefs about childhood vaccination and vaccination information provision.

This is a report on the impact of library workers' personal beliefs on provision of vaccination information. Nine public librarians were interviewed about a hypothetical scenario involving a patron who is concerned about possible vaccination-autism connections. The analysis employed thematic coding. Results suggested that while most participants supported childhood vaccination, tension between their personal views and neutrality impacted their ability to conduct the interaction. The neutrality stance, though consonant with professional guidelines, curtails librarians' ability to provide accurate health information. Outreach and communication between public and health sciences libraries can help librarians provide resources to address health controversies.

Empowering Patients and Community Online: Evaluation of the AIDS Community Information Outreach Program.

The AIDS Community Information Outreach Program (ACIOP) was created in 1994 to assist the affected community in utilizing electronic HIV/AIDS information resources. Nearly 300 competitive awards have been made to mostly community-based organizations. A formal evaluation was undertaken to determine the performance and impact of the ACIOP. A mixed methods design combined quantitative abstractions and summarization of 47 awardee final reports from 44 organizations, and qualitative telephone interviews with 17 individuals representing 20 projects. Findings revealed that project objectives were mostly met; high-risk populations were reached; low resource organizations were funded; community partnerships were significant; projects built on existing efforts; information resources and training were tailored to local needs; and most projects overcame barriers experienced. Needed modifications centered on: 1) enhancing evaluation capacity at the individual project level and 2) revising project reporting requirements to increase the amount of information available to assess the ACIOP; both have been implemented.

Evaluation of health information outreach: theory, practice, and future direction.

OBJECTIVE: Convincing evidence of the effectiveness of health information outreach projects is essential to ensure their continuity. This paper reviews the current state of health information outreach evaluation, characterizes strengths and weaknesses in projects' ability to measure their impact, and assesses enablers of and barriers to projects' success. It also relates the projects' characteristics to evaluation practices. The paper then makes recommendations for strengthening evaluation. METHODS: Upon conducting a literature search, the authors identified thirty-three articles describing consumer health information outreach programs, published between 2000 and 2010. We then analyzed the outreach projects with respect to their goals and characteristics, evaluation methods and measures, and reported outcomes. RESULTS: The results uncovered great variation in the quality of evaluation methods, outcome measures, and reporting. Outcome measures did not always match project objectives; few quantitative measures employed pretests or reported statistical significance; and institutional change was not measured in a structured way. While papers reported successful outcomes, greater rigor in measuring and documenting outcomes would be helpful. CONCLUSION: Planning outcome evaluation carefully and conducting research into mediators between health information and behavior will strengthen the ability to identify best practices and develop a theoretical framework and practical guidance for health information outreach.

A classification of errors in lay comprehension of medical documents.

Emphasis on participatory medicine requires that patients and consumers participate in tasks traditionally reserved for healthcare providers. This includes reading and comprehending medical documents, often but not necessarily in the context of interacting with Personal Health Records (PHRs). Research suggests that while giving patients access to medical documents has many benefits (e.g., improved patient-provider communication), lay people often have difficulty understanding medical information. Informatics can address the problem by developing tools that support comprehension; this requires in-depth understanding of the nature and causes of errors that lay people make when comprehending clinical documents. The objective of this study was to develop a classification scheme of comprehension errors, based on lay individuals' retellings of two documents containing clinical text: a description of a clinical trial and a typical office visit note. While not comprehensive, the scheme can serve as a foundation of further development of a taxonomy of patients' comprehension errors. Eighty participants, all healthy volunteers, read and retold two medical documents. A data-driven content analysis procedure was used to extract and classify retelling errors. The resulting hierarchical classification scheme contains nine categories and 23 subcategories. The most common error made by the participants involved incorrectly recalling brand names of medications. Other common errors included misunderstanding clinical concepts, misreporting the objective of a clinical research study and physician's findings during a patient's visit, and confusing and misspelling clinical terms. A combination of informatics support and health education is likely to improve the accuracy of lay comprehension of medical documents.

Tipping the Fencesitters-The Impact of a Minimal Intervention Enhanced with Biological Facts on Swiss Student Teachers' Perception of HPV Vaccination Safety.

Not much is known about the role of scientific knowledge in vaccination decision making. This study is based on previous findings that the concern about the human papillomavirus (HPV) agent mutating back to a virulent HPV was common among Swiss student teachers and turned out to be one factor of vaccine hesitancy. The study investigate the impact of a standard public health brochure describing the effectiveness, safety, and importance of HPV vaccination on young student teachers, and the additional effect of supplementing the standard brochure with biological arguments against the mutation concerns. It uses a pre-posttest design and assigns participants randomly to two groups, one reviewing a standard public health brochure, the other the same brochure enhanced with additional biological information. Participants in both groups showed a significant positive change in their beliefs about vaccination safety, effectiveness, and importance in preventing cervical cancer. Post hoc analysis showed significant safety beliefs gain for the subgroup of participants who received the biology-enhanced text and held moderate, rather than high or low, pretest safety beliefs-the so-called fencesitters. We conclude that these fencesitters may particularly profit from even minimal (biologically supplemented) interventions, an effect that should receive more attention in future research.

Cognitive and Cultural Factors That Affect General Vaccination and COVID-19 Vaccination Attitudes.

The development of COVID-19 vaccines is a major scientific accomplishment that has armed communities worldwide with powerful epidemic control tools. Yet, COVID-19 vaccination efforts in the US have been marred by persistent vaccine hesitancy. We used survey methodology to explore the impact of different cognitive and cultural factors on the public's general vaccination attitudes, attitudes towards COVID-19 vaccines, and COVID-19 vaccination status. The factors include information literacy, science literacy, attitudes towards science, interpersonal trust, public health trust, political ideology, and religiosity. The analysis suggests that attitudes towards vaccination are influenced by a multitude of factors that operate in a complex manner. General vaccination attitude was most affected by attitudes towards science and public health trust and to a lesser degree by information literacy, science literacy, and religiosity. Attitudes towards COVID-19 vaccines were most affected by public health trust and to a lesser extent by general trust, ideology and attitudes towards science. Vaccination status was most influenced by public health trust. Possible mediating effects of correlated variables in the model need to be further explored. The study underscores the importance of understanding the relationship between public health trust, literacies, and sociocultural factors.

Beyond readability: investigating coherence of clinical text for consumers.

BACKGROUND: A basic tenet of consumer health informatics is that understandable health resources empower the public. Text comprehension holds great promise for helping to characterize consumer problems in understanding health texts. The need for efficient ways to assess consumer-oriented health texts and the availability of computationally supported tools led us to explore the effect of various text characteristics on readers' understanding of health texts, as well as to develop novel approaches to assessing these characteristics. OBJECTIVE: The goal of this study was to compare the impact of two different approaches to enhancing readability, and three interventions, on individuals' comprehension of short, complex passages of health text. METHODS: Participants were 80 university staff, faculty, or students. Each participant was asked to "retell" the content of two health texts: one a clinical trial in the domain of diabetes mellitus, and the other typical Visit Notes. These texts were transformed for the intervention arms of the study. Two interventions provided terminology support via (1) standard dictionary or (2) contextualized vocabulary definitions. The third intervention provided coherence improvement. We assessed participants' comprehension of the clinical texts through propositional analysis, an open-ended questionnaire, and analysis of the number of errors made. RESULTS: For the clinical trial text, the effect of text condition was not significant in any of the comparisons, suggesting no differences in recall, despite the varying levels of support (P=.84). For the Visit Note, however, the difference in the median total propositions recalled between the Coherent and the (Original+Dictionary) conditions was significant (P=.04). This suggests that participants in the Coherent condition recalled more of the original Visit Notes content than did participants in the Original and the Dictionary conditions combined. However, no difference was seen between (Original+Dictionary) and Vocabulary (P=.36) nor Coherent and Vocabulary (P=.62). No statistically significant effect of any document transformation was found either in the open-ended questionnaire (clinical trial: P=.86, Visit Note: P=.20) or in the error rate (clinical trial: P=.47, Visit Note: P=.25). However, post hoc power analysis suggested that increasing the sample size by approximately 6 participants per condition would result in a significant difference for the Visit Note, but not for the clinical trial text. CONCLUSIONS: Statistically, the results of this study attest that improving coherence has a small effect on consumer comprehension of clinical text, but the task is extremely labor intensive and not scalable. Further research is needed using texts from more diverse clinical domains and more heterogeneous participants, including actual patients. Since comprehensibility of clinical text appears difficult to automate, informatics support tools may most productively support the health care professionals tasked with making clinical information understandable to patients.

Can multilingual machine translation help make medical record content more comprehensible to patients?

With the development of electronic personal health records, more patients are gaining access to their own medical records. However, comprehension of medical record content remains difficult for many patients. Because each record is unique, it is also prohibitively costly to employ human translators to solve this problem. In this study, we investigated whether multilingual machine translation could help make medical record content more comprehensible to patients who lack proficiency in the language of the records. We used a popular general-purpose machine translation tool called Babel Fish to translate 213 medical record sentences from English into Spanish, Chinese, Russian and Korean. We evaluated the comprehensibility and accuracy of the translation. The text characteristics of the incorrectly translated sentences were also analyzed. In each language, the majority of the translations were incomprehensible (76% to 92%) and/or incorrect (77% to 89%). The main causes of the translation are vocabulary difficulty and syntactical complexity. A general-purpose machine translation tool like the Babel Fish is not adequate for the translation of medical records; however, a machine translation tool can potentially be improved significantly, if it is trained to target certain narrow domains in medicine.

Consumer health information seeking as hypothesis testing.

OBJECTIVE: Despite the proliferation of consumer health sites, lay individuals often experience difficulty finding health information online. The present study attempts to understand users' information seeking difficulties by drawing on a hypothesis testing explanatory framework. It also addresses the role of user competencies and their interaction with internet resources. DESIGN: Twenty participants were interviewed about their understanding of a hypothetical scenario about a family member suffering from stable angina and then searched MedlinePlus consumer health information portal for information on the problem presented in the scenario. Participants' understanding of heart disease was analyzed via semantic analysis. Thematic coding was used to describe information seeking trajectories in terms of three key strategies: verification of the primary hypothesis, narrowing search within the general hypothesis area and bottom-up search. RESULTS: Compared to an expert model, participants' understanding of heart disease involved different key concepts, which were also differently grouped and defined. This understanding provided the framework for search-guiding hypotheses and results interpretation. Incorrect or imprecise domain knowledge led individuals to search for information on irrelevant sites, often seeking out data to confirm their incorrect initial hypotheses. Online search skills enhanced search efficiency, but did not eliminate these difficulties. CONCLUSIONS: Regardless of their web experience and general search skills, lay individuals may experience difficulty with health information searches. These difficulties may be related to formulating and evaluating hypotheses that are rooted in their domain knowledge. Informatics can provide support at the levels of health information portals, individual websites, and consumer education tools.

Estimating consumer familiarity with health terminology: a context-based approach.

OBJECTIVES: Effective health communication is often hindered by a "vocabulary gap" between language familiar to consumers and jargon used in medical practice and research. To present health information to consumers in a comprehensible fashion, we need to develop a mechanism to quantify health terms as being more likely or less likely to be understood by typical members of the lay public. Prior research has used approaches including syllable count, easy word list, and frequency count, all of which have significant limitations. DESIGN: In this article, we present a new method that predicts consumer familiarity using contextual information. The method was applied to a large query log data set and validated using results from two previously conducted consumer surveys. MEASUREMENTS: We measured the correlation between the survey result and the context-based prediction, syllable count, frequency count, and log normalized frequency count. RESULTS: The correlation coefficient between the context-based prediction and the survey result was 0.773 (p < 0.001), which was higher than the correlation coefficients between the survey result and the syllable count, frequency count, and log normalized frequency count (p < or = 0.012). CONCLUSIONS: The context-based approach provides a good alternative to the existing term familiarity assessment methods.

Developing informatics tools and strategies for consumer-centered health communication.

As the emphasis on individuals' active partnership in health care grows, so does the public's need for effective, comprehensible consumer health resources. Consumer health informatics has the potential to provide frameworks and strategies for designing effective health communication tools that empower users and improve their health decisions. This article presents an overview of the consumer health informatics field, discusses promising approaches to supporting health communication, and identifies challenges plus direction for future research and development. The authors' recommendations emphasize the need for drawing upon communication and social science theories of information behavior, reaching out to consumers via a range of traditional and novel formats, gaining better understanding of the public's health information needs, and developing informatics solutions for tailoring resources to users' needs and competencies. This article was written as a scholarly outreach and leadership project by members of the American Medical Informatics Association's Consumer Health Informatics Working Group.

Consumer health concepts that do not map to the UMLS: where do they fit?

OBJECTIVE: This study has two objectives: first, to identify and characterize consumer health terms not found in the Unified Medical Language System (UMLS) Metathesaurus (2007 AB); second, to describe the procedure for creating new concepts in the process of building a consumer health vocabulary. How do the unmapped consumer health concepts relate to the existing UMLS concepts? What is the place of these new concepts in professional medical discourse? DESIGN: The consumer health terms were extracted from two large corpora derived in the process of Open Access Collaboratory Consumer Health Vocabulary (OAC CHV) building. Terms that could not be mapped to existing UMLS concepts via machine and manual methods prompted creation of new concepts, which were then ascribed semantic types, related to existing UMLS concepts, and coded according to specified criteria. RESULTS: This approach identified 64 unmapped concepts, 17 of which were labeled as uniquely "lay" and not feasible for inclusion in professional health terminologies. The remaining terms constituted potential candidates for inclusion in professional vocabularies, or could be constructed by post-coordinating existing UMLS terms. The relationship between new and existing concepts differed depending on the corpora from which they were extracted. CONCLUSION: Non-mapping concepts constitute a small proportion of consumer health terms, but a proportion that is likely to affect the process of consumer health vocabulary building. We have identified a novel approach for identifying such concepts.

Trends in HIV Terminology: Text Mining and Data Visualization Assessment of International AIDS Conference Abstracts Over 25 Years.

BACKGROUND: The language encompassing health conditions can also influence behaviors that affect health outcomes. Few published quantitative studies have been conducted that evaluate HIV-related terminology changes over time. To expand this research, this study included an analysis of a dataset of abstracts presented at the International AIDS Conference (IAC) from 1989 to 2014. These abstracts reflect the global response to HIV over 25 years. Two powerful methodologies were used to evaluate the dataset: text mining to convert the unstructured information into structured data for analysis and data visualization to represent the data visually to assess trends. OBJECTIVE: The purpose of this project was to evaluate the evolving use of HIV-related language in abstracts presented at the IAC from 1989 to 2014. METHODS: Over 80,000 abstracts were obtained from the International AIDS Society and imported into a Microsoft SQL Server database for data processing and text mining analyses. A text mining module within the KNIME Analytics Platform, an open source software, was then used to mine the partially processed data to create a terminology corpus of key HIV terms. Subject matter experts grouped the terms into categories. Tableau, a data visualization software, was used to visualize the frequency metrics associated with the terms as line graphs and word clouds. The visualized dashboards were reviewed to discern changes in terminology use across IAC years. RESULTS: The major findings identify trends in HIV-related terminology over 25 years. The term "AIDS epidemic" was dominantly used from 1989 to 1991 and then declined in use. In contrast, use of the term "HIV epidemic" increased through 2014. Beginning in the mid-1990s, the term "treatment experienced" appeared with increasing frequency in the abstracts. Use of terms identifying individuals as "carriers or victims" of HIV rarely appeared after 2008. Use of the terms "HIV positive" and "HIV infected" peaked in the early-1990s and then declined in use. The terms "men who have sex with men" and "MSM" were rarely used until 1994; subsequently, use of these terms increased through 2014. The term "sex worker" steadily increased in frequency throughout conference years, whereas the term "prostitute" decreased over time. CONCLUSIONS: The results of this study highlight changes in HIV terminology use over 25 years, including the addition, disappearance, and changing use of terms that reflect advances in HIV research and medical practice and destigmatization of the disease. Coupled with findings from related quantitative research, HIV-related terminology recommendations based on results of this study are included. Adoption of these recommendations will further efforts to use less stigmatizing language and facilitate effective communication between health professionals and people affected by HIV.

Attitudes toward medical device use errors and the prevention of adverse events.

BACKGROUND: The design of a device's user interface often contributes to the chance of a user making an error in using the device. However, there is evidence that most such errors that occur in practice are attributed solely to the user and that the primary method of error prevention is to retrain the user. Yet this attitude may decrease the quality of error reports and the use of more effective error prevention strategies. A qualitative study was conducted to assess health care employees' attitudes toward device use errors and the prevention of adverse events. METHODS: Twenty-six health care employees from three hospital systems, including 11 device users and 15 nonusers who had participated in infusion pump purchasing decisions were given a scenario describing a device use error involving an infusion pump. Several open-ended questions assessed what they felt led to the event and how they would prevent the event from reccurring. RESULTS: The top three reported types of factors leading to the adverse event, in decreasing order of frequency, were the user, pump design problems, and lack of training. The top three prevention strategies reported by the participants were retraining the user, redesigning the device, and telling the user to be careful. DISCUSSION: These results suggest that health care employees still put too much emphasis on the traditional view of blaming and retraining the user.