Making High-Quality Health Information More Visible – A Proposal for a Set of Criteria to Assess Information Provider Methods

In 2003, the International Patient Decision Aid Standards (IPDAS) Collaboration was established to enhance the quality and effectiveness of patient decision aids by establishing an evidence-informed framework for improving their content, development, implementation, and evaluation. Over this 10 year period, the Collaboration has established: a) the background document on 12 core dimensions to inform the original modified Delphi process to establish the IPDAS checklist (74 items); b) the valid and reliable IPDAS instrument (47 items); and c) the IPDAS qualifying (6 items), certifying (6 items + 4 items for screening), and quality criteria (28 items). The objective of this paper is to describe the evolution of the IPDAS Collaboration and discuss the standardized process used to update the background documents on the theoretical rationales, evidence and emerging issues underlying the 12 core dimensions for assessing the quality of patient decision aids.

Quality of patient decision aids to support the public making COVID-19 decisions: An online environmental scan

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.

A growing number of patients use online patient decision aids (PtDAs) due to their easy accessibility. However, PtDAs found on the internet are not regulated and vary in quality and readability. The aim of this study is to assess urological PtDAs for their readability, quality as consumer health information and quality as decision aid. Searches were conducted on Google, PubMed®, Embase® and decision aid repositories for patient decision aids on pelvic organ prolapse, urinary incontinence, benign prostatic hyperplasia and overactive bladder. The decision aids were screened for relevance and patient directed nature. They were then evaluated using 4 readability formulas, the validated DISCERN quality criteria and the International Patient Decision Aids Standards v4.0 minimum standards criteria. Our search revealed 23 patient decision aids, of which 14 were ultimately included for analysis. The mean grade level readability score calculated by the 4 readability formulas was 11, far exceeding the 6th grade reading level recommended by the National Institutes of Health. The average DISCERN score was 57.6 (SD 6.7), which indicates "good" quality as online health information. The average International Patient Decision Aids Standards v4.0 minimum standards criteria score was 8.3 (SD 1.5), with none meeting all 12 minimum requirements of a patient decision aid. Online patient decision aids for pelvic organ prolapse, urinary incontinence, benign prostatic hyperplasia and overactive bladder require a higher reading level than recommended by the National Institutes of Health. While decision aids are acceptable as online health information, none meets all 12 international standards for patient decision aids.

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.

Background: With the increasing global accessibility and universal availability of the Internet, online information has become the primary source of health information for patients for conditions, including stroke and transient ischemic attack (TIA).Purpose: Our goal was to assess online health information available for patients and families on stroke and TIA. Specifically, we assessed the content, quality, reliability and readability of websites using a content checklist generated by our team as well as standardized tools.Findings: The definition of stroke, as well as signs, symptoms and causes were the most commonly mentioned information on stroke and TIA websites while complications of therapy were the least mentioned. The average website readability age was 15 years or more. Only 24.5% of websites were certified by Health on the Net Foundation. Overall JAMA criteria score was low (the highest met criterion is in only 68% of websites). The average score for DISCERN criteria for website quality was 3.36/5.Conclusion: Stroke and TIA websites commonly define stroke and when to access medical care but have little information on the complications of stroke therapies. Much of the information is difficult to read for low literacy audiences and the quality of the information is highly variable.

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.

At the interface of medicine and dentistry: shared decision-making using decision aids and clinical decision support tools

Shared decision making (SDM) is grounded in a compelling theoretical framework that ideally helps patients make decisions that are informed and concordant with their goals and values.1,2 Yet operationalizing SDM within routine clinical care remains an important challenge. Several approaches have been studied to improve SDM; such strategies include educating clinicians on communication techniques, using a multidisciplinary medical team, incorporating trained decision coaches, and using tools to support patients in their decision making. These tools, commonly referred to as patient decision aids (PtDAs), have garnered the most interest in operationalizing SDM.3 Accordingly, this article will focus specifically on the development and testing of PtDAs highlighting some important key points (see Box). ### Key Points of the Article on Decision Tool Development 1. PtDAs should be used in conjunction with a conversation with a clinician. 2. Helping patients consider and clarify their values around a decision is what makes a PtDA different from an information pamphlet. 3. Development is iterative, and the key tasks are to make sure the information is understandable, accurate, and unbiased and that the tool fits the needs and workflow of the end-users. 4. Trials designed to test the effectiveness of a decision aid need to consider both the patient’s and the clinician’s experience with the tool. 5. Decision aids should be living documents that will require updating when new information arises. Extensive work has been undertaken by the International Patient Decision Aid Standards (IPDAS) collaboration to provide guidance in this arena. Founded in 2003, IPDAS aims to “enhance the quality and effectiveness of PtDAs by establishing an evidence-informed framework for improving their content, development, implementation, and evaluation.”4,5 This article will draw on the extensive work of the IPDAS collaboration to describe a 4-step development process for those interested in developing PtDAs, which includes, step 1: understanding the decision; step 2: drafting the first …

Shared decision making is recommended for lung cancer screening (LCS) by professional organizations and payers. Patient decision aids can be used to support shared decision making, but they need to meet quality standards to minimize the potential for biased and poorly informed patient decisions. After the updated LCS recommendation from the US Preventive Services Task Force in 2021, the authors conducted an environmental scan of public‐facing patient educational materials and evaluated them against criteria from the International Patient Decision Aid Standards for high‐quality patient decision aids. The Google site search function was used to search websites from National Cancer Institute‐funded cancer centers, professional societies, patient advocacy groups, cancer coalitions, and private organizations for educational materials on LCS. A general web search using Google, Google Scholar, and select databases was also conducted. Considerations unique to the LCS context (e.g., the importance of annual screening and smoking cessation) were documented. The search identified 96 educational materials that included information about both benefits and harms of LCS. Of these, 39 did not meet qualifying criteria for decision aids, with failure to explicitly identify LCS as a decision being the primary reason for exclusion. Only 10 of the remaining decision aids met quality criteria from the International Patient Decision Aid Standards. These aids emphasized that LCS should be performed annually, most avoided stigmatizing language, and several included personalization features using prediction models. Clinicians and patients can be confident in using these high‐quality aids to complement the process of shared decision making for LCS. Validated aids in languages other than English and Spanish are needed.

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.

International assessment on quality and content of internet information on osteoarthritis

BackgroundTransgender and gender diverse (TGD) persons considering gender affirming therapy have to make many complex medical decisions, potentially without understanding the associated harms or benefits of hormonal and surgical interventions. Further, clinicians are often unaware of how best to communicate information to persons seeking gender affirming therapy. Patient decision aids have been developed to provide evidence-based information as a way to help people make decisions in collaboration with their clinicians. It is unclear whether such tools exist for persons seeking gender affirming therapy. The objective of our systematic review is to search for and determine the quality of any existing patient decision aids developed for TGD persons considering gender affirming therapy, and the outcomes associated with their use.MethodsWe adapted a search strategy for databases using two key concepts “decision support intervention/patient decision aid” and “transgender”. We also conducted a brief online search of Google and abstracts from relevant conferences to identify any tools not published in the academic literature. Following study selection and data extraction, we used the International Patient Decision Aid Standards instrument (IPDASi) to assess the quality of patient decision aids, and the Standards for UNiversal reporting of patient Decision Aid Evaluations (SUNDAE) checklist to assess the quality of evaluations.ResultsWe identified 762 studies; none were identified from Google or conference content. One tool met our inclusion criteria: an online, pre-encounter patient decision aid for transmasculine genital gender-affirming surgery developed in Amsterdam, translated in English and Dutch. The tool met all the IPDASi qualifying criteria, and scored a 17/28 on the certification criteria, and 57/112 on the quality criteria. The efficacy of the patient decision aid has not been evaluated.ConclusionsDespite multiple decisions required for gender affirming therapies, only one patient decision aid has been developed for transmasculine genital reconstruction. Further research is required to develop patient decision aids for the multiple decision points along the gender affirming journey.

ObjectivesTo assess the communicative quality of colorectal cancer patient decision aids (DAs) about treatment options, the current systematic review was conducted.DesignSystematic review.Data sourcesDAs (published between 2006 and 2019) were identified...

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