From illness management to quality of life: rethinking consumer health informatics opportunities for progressive, potentially fatal illnesses.

OBJECTIVES: Investigate how people with chronic obstructive pulmonary disease (COPD)-an example of a progressive, potentially fatal illness-are using digital technologies (DTs) to address illness experiences, outcomes and social connectedness. MATERIALS AND METHODS: A transformative mixed methods study was conducted in Canada with people with COPD (n = 77) or with a progressive lung condition (n = 6). Stage-1 interviews (n = 7) informed the stage-2 survey. Survey responses (n = 80) facilitated the identification of participants for stage-3 interviews (n = 13). The interviews were thematically analyzed. Descriptive statistics were calculated for the survey. The integrative mixed method analysis involved mixing between and across the stages. RESULTS: Most COPD participants (87.0%) used DTs. However, few participants frequently used DTs to self-manage COPD. People used DTs to seek online information about COPD symptoms and treatments, but lacked tailored information about illness progression. Few expressed interest in using DTs for self- monitoring and tracking. The regular use of DTs for intergenerational connections may facilitate leaving a legacy and passing on traditions and memories. Use of DTs for leisure activities provided opportunities for connecting socially and for respite, reminiscing, distraction and spontaneity. DISCUSSION AND CONCLUSION: We advocate reconceptualizing consumer health technologies to prioritize quality of life for people with a progressive, potentially fatal illness. "Quality of life informatics" should focus on reducing stigma regarding illness and disability and taboo towards death, improving access to palliative care resources and encouraging experiences to support social, emotional and mental health. For DTs to support people with fatal, progressive illnesses, we must expand informatics strategies to quality of life.

Consumer Informatics and One Health: Shifting the Focus from the Individual to the Globe. Findings from the Yearbook 2023 Section on Education and Consumer Health Informatics.

OBJECTIVE: To summarise the state of the art during the year 2022 in consumer health informatics and education, with a special emphasis on "One Health". METHODS: We conducted a systematic search of articles published in PubMed. We build queries to merge terms related to "consumer health informatics", "one health", and "digital". We retrieved 94 potential articles for review. These articles were screened according to topic relevance and 12 were selected for consideration of best paper candidates, which were then presented to a panel of international experts for full paper review and scoring. The top five papers were discussed in a consensus meeting. Three papers received the highest score from the expert panel, and these papers were selected to be representative papers on consumer informatics for exploring one health from consumer perspective in the year 2022. RESULTS: Bibliometrics analysis conducted on words found in abstracts of the 12 candidate papers revealed four clusters of articles, where clustering outcomes explained 96.91% of the dispersion. The first cluster composes three papers related to patient engagement in primary care practices, using digital-delivered diabetes prevention programmes, or exploring citizen involvement in co-designing environmental projects (such as air pollution exposure and health). The second cluster represents four papers related to digital health literacy and consumer behavior, such as digital vaccine literacy, and food labelling influences and whether displaying Nutri- and Eco-Score at food product level led to improved consumer choices. The third cluster consists of two papers exploring strategies to involve citizens in various science projects while analyzing the quality of citizen-collected data (e.g., mosquito bites or gastropod community dataset). The last cluster contains three papers related to the relationships between human behavior with their environment and their contribution to citizen science projects (e.g., biological water quality in the Netherlands distribution, composition, abundance of debris across sandy beaches in Australia and its regions, urbanization and reptile biodiversity across Florida). CONCLUSION: Traditionally, consumer health informatics focuses on providing individuals with tools and resources to actively manage their own health. By incorporating a global health (or one health) perspective, our field is now at a crossroad, demanding us to think beyond the individual and challenging us to instill the thinking that our actions not only have consequences on the individual but also on the population and the environment. Perhaps this is also a reflective time for the consumer informatics field, to consider shifting the focus from the individual to one that is more aligned with one health, helping consumers gain awareness of how their actions impact on the individual, the population and the environment, and providing them with tools to work collectively to help decide how their actions may bring benefits (as well as harms) across these levels.

Artificial Intelligence-Based Consumer Health Informatics Application: Scoping Review.

BACKGROUND: There is no doubt that the recent surge in artificial intelligence (AI) research will change the trajectory of next-generation health care, making it more approachable and accessible to patients. Therefore, it is critical to research patient perceptions and outcomes because this trend will allow patients to be the primary consumers of health technology and decision makers for their own health. OBJECTIVE: This study aimed to review and analyze papers on AI-based consumer health informatics (CHI) for successful future patient-centered care. METHODS: We searched for all peer-reviewed papers in PubMed published in English before July 2022. Research on an AI-based CHI tool or system that reports patient outcomes or perceptions was identified for the scoping review. RESULTS: We identified 20 papers that met our inclusion criteria. The eligible studies were summarized and discussed with respect to the role of the AI-based CHI system, patient outcomes, and patient perceptions. The AI-based CHI systems identified included systems in mobile health (13/20, 65%), robotics (5/20, 25%), and telemedicine (2/20, 10%). All the systems aimed to provide patients with personalized health care. Patient outcomes and perceptions across various clinical disciplines were discussed, demonstrating the potential of an AI-based CHI system to benefit patients. CONCLUSIONS: This scoping review showed the trend in AI-based CHI systems and their impact on patient outcomes as well as patients' perceptions of these systems. Future studies should also explore how clinicians and health care professionals perceive these consumer-based systems and integrate them into the overall workflow.

Characterizing terminology applied by authors and database producers to informatics literature on consumer engagement with wearable devices.

OBJECTIVE: Identifying consumer health informatics (CHI) literature is challenging. To recommend strategies to improve discoverability, we aimed to characterize controlled vocabulary and author terminology applied to a subset of CHI literature on wearable technologies. MATERIALS AND METHODS: To retrieve articles from PubMed that addressed patient/consumer engagement with wearables, we developed a search strategy of textwords and Medical Subject Headings (MeSH). To refine our methodology, we used a random sample of 200 articles from 2016 to 2018. A descriptive analysis of articles (N = 2522) from 2019 identified 308 (12.2%) CHI-related articles, for which we characterized their assigned terminology. We visualized the 100 most frequent terms assigned to the articles from MeSH, author keywords, CINAHL, and Engineering Databases (Compendex and Inspec together). We assessed the overlap of CHI terms among sources and evaluated terms related to consumer engagement. RESULTS: The 308 articles were published in 181 journals, more in health journals (82%) than informatics (11%). Only 44% were indexed with the MeSH term "wearable electronic devices." Author keywords were common (91%) but rarely represented consumer engagement with device data, eg, self-monitoring (n = 12, 0.7%) or self-management (n = 9, 0.5%). Only 10 articles (3%) had terminology from all sources (authors, PubMed, CINAHL, Compendex, and Inspec). DISCUSSION: Our main finding was that consumer engagement was not well represented in health and engineering database thesauri. CONCLUSIONS: Authors of CHI studies should indicate consumer/patient engagement and the specific technology investigated in titles, abstracts, and author keywords to facilitate discovery by readers and expand vocabularies and indexing.

Challenges and Opportunities for Professional Medical Publications Writers to Contribute to Plain Language Summaries (PLS) in an AI/ML Environment - A Consumer Health Informatics Systematic Review.

Professional medical publications writers (PMWs) cover a wide range of biomedical writing activities that recently includes translation of biomedical publications to plain language summaries (PLS). The consumer health informatics literature (CHI) consistently describes the importance of incorporating health literacy principles in any natural language processing (NLP) app designed to communicate medical information to lay audiences, particularly patients. In this stepwise systematic review, we searched PubMed indexed literature for CHI NLP-based apps that have the potential to assist PMWs in developing text based PLS. Results showed that available apps are limited to patient portals and other technologies used to communicate medical text and reports from electronic health records. PMWs can apply the lessons learned from CHI NLP-based apps to supervise development of tools specific to text simplification and summarization for PLS from biomedical publications.

Consumer Health Informatics for Racial and Ethnic Minoritized Communities: Minor Progress, Major Opportunities.

OBJECTIVE: By reducing barriers to accessing health services and by supporting health management, consumer health informatics has the potential to reduce health disparities. Yet, technologies are still being designed without considerations for racial and ethnic minoritized populations. This paper reviews consumer health informatics research within this population to assess for whom and how such technologies are being designed. METHODS: We searched four databases from January 2020- December 2021 for literature focused on consumer health informatics and racial and ethnic minoritized populations. We extracted information about the study population, geographic location, stage of the design lifecycle, culturally tailored approaches, community engagement strategies, and considerations for the social determinants of health. RESULTS: Twenty articles were included in the review. Most of the included literature were original research articles that tested health management interventions focused on one racial or ethnic minoritized population primarily within a confined geographic area within the United States. Seven studies described the extent to which an intervention was culturally tailored, including modifying the content, interface, functionality, and platform. Community engagement strategies varied, but few articles employed robust approaches. Lastly, seven studies detailed considerations for the social determinants of health, including providing hardware to access interventions and incorporating information about community-based resources within an intervention. CONCLUSIONS: There has been moderate progress in consumer health informatics focused on racial and ethnic minoritized populations and many opportunities remain for these technologies to be used as an approach to address health disparities. Future research should utilize community engagement strategies to design interventions that are attune to multiple racial and ethnic minoritized populations across geographic regions in addition to numerous intersectional identities and multiple co-morbidities.

Leveraging an Informatics Approach to Identify an Unmet Clinical Need for BRCA1/2 Testing Among Patients With Ovarian Cancer.

PURPOSE: Although BRCA1/2 testing in ovarian cancer improves outcomes, it is vastly underutilized. Scalable approaches are urgently needed to improve genomically guided care. METHODS: We developed a Natural Language Processing (NLP) pipeline to extract electronic medical record information to identify recipients of BRCA testing. We applied the NLP pipeline to assess testing status in 308 patients with ovarian cancer receiving care at a National Cancer Institute Comprehensive Cancer Center (main campus [MC] and five affiliated clinical network sites [CNS]) from 2017 to 2019. We compared characteristics between (1) patients who had/had not received testing and (2) testing utilization by site. RESULTS: We found high uptake of BRCA testing (approximately 78%) from 2017 to 2019 with no significant differences between the MC and CNS. We observed an increase in testing over time (67%-85%), higher uptake of testing among younger patients (mean age tested = 61 years v untested = 65 years, P = .01), and higher testing among Hispanic (84%) compared with White, Non-Hispanic (78%), and Asian (75%) patients (P = .006). Documentation of referral for an internal genetics consultation for BRCA pathogenic variant carriers was higher at the MC compared with the CNS (94% v 31%). CONCLUSION: We were able to successfully use a novel NLP pipeline to assess use of BRCA testing among patients with ovarian cancer. Despite relatively high levels of BRCA testing at our institution, 22% of patients had no documentation of genetic testing and documentation of referral to genetics among BRCA carriers in the CNS was low. Given success of the NLP pipeline, such an informatics-based approach holds promise as a scalable solution to identify gaps in genetic testing to ensure optimal treatment interventions in a timely manner.

Improving usability benchmarking for the eHealth domain: The development of the eHealth UsaBility Benchmarking instrument (HUBBI).

BACKGROUND: Currently, most usability benchmarking tools used within the eHealth domain are based on re-classifications of old usability frameworks or generic usability surveys. This makes them outdated and not well suited for the eHealth domain. Recently, a new ontology of usability factors was developed for the eHealth domain. It consists of eight categories: Basic System Performance (BSP), Task-Technology Fit (TTF), Accessibility (ACC), Interface Design (ID), Navigation & Structure (NS), Information & Terminology (IT), Guidance & Support (GS) and Satisfaction (SAT). OBJECTIVE: The goal of this study is to develop a new usability benchmarking tool for eHealth, the eHealth UsaBility Benchmarking Instrument (HUBBI), that is based on a new ontology of usability factors for eHealth. METHODS: First, a large item pool was generated containing 66 items. Then, an online usability test was conducted, using the case study of a Dutch website for general health advice. Participants had to perform three tasks on the website, after which they completed the HUBBI. Using Partial Least Squares Structural Equation Modelling (PLS-SEM), we identified the items that assess each factor best and that, together, make up the HUBBI. RESULTS: A total of 148 persons participated. Our selection of items resulted in a shortened version of the HUBBI, containing 18 items. The category Accessibility is not included in the final version, due to the wide range of eHealth services and their heterogeneous populations. This creates a constantly different role of Accessibility, which is a problem for a uniform benchmarking tool. CONCLUSIONS: The HUBBI is a new and comprehensive usability benchmarking tool for the eHealth domain. It assesses usability on seven domains (BSP, TTF, ID, NS, IT, GS, SAT) in which a score per domain is generated. This can help eHealth developers to quickly determine which areas of the eHealth system's usability need to be optimized.

Providing Health Information for Patients, Families and the Public.

When Dr. Lindberg was sworn in as Director, the National Library of Medicine (NLM) was providing few resources with information useful to the public, having concentrated efforts towards health professionals and scientists. With his arrival, and that of the Internet in the 1990s, NLM embarked on a research and user-focused path towards providing authoritative health information for patients, families and the public. MedlinePlus, NIHSeniorHealth, and MedlinePlus en espanol delivered health information in a variety of formats using text, still images, audio and video. These resources were supported by NLM advisors and Dr. Lindberg's strong belief that patients and families needed easy access to medical information to be able to effectively care for themselves in illness and maintain the best health possible throughout their lives.

Consumer Informatics and COVID-19 Pandemics: Challenges and Opportunities for Research.

OBJECTIVE: To summarise the state of the art during the year 2020 in consumer health informatics and education, with a special emphasis on "Managing Pandemics with Health Informatics - Successes and Challenges". METHODS: We conducted a systematic search of articles published in PubMed using a predefined set of queries, which identified 147 potential articles for review. These articles were screened according to topic relevance and 15 were selected for consideration of best paper candidates, which were then presented to a panel of international experts for full paper review and scoring. The top five papers were discussed in a consensus meeting. Three papers received the highest score from the expert panel, and these papers were selected to be representative papers on consumer informatics for managing pandemics in the year 2020. RESULTS: Bibliometrics analysis conducted on words found in abstracts of the candidate papers revealed 4 clusters of articles, where the clustering outcomes explained 77.04% of the dispersion. The first cluster composed of articles related to the use of mobile apps for video consultation and telehealth during the pandemic. The second revealed studies reporting the lived experience of healthcare workers and patients during COVID-19. The third focused on ways people used the internet to seek for health information during the pandemic and the dissemination of fake news. The last cluster composed of articles reporting the use of social listening methods (e.g., via tweet hashtags) to explore the spread of the virus around the world. CONCLUSIONS: The pandemic outbreak of the novel coronavirus disease (COVID-19) constitutes a grave risk to the global community and sparks a significant increase in public interest and media coverage, especially on social media. Consumers are facing a new set of challenges that were not considered before COVID-19, often finding themselves in a world that is constantly changing-blended with facts and fake information-and unable to decide what to do next. Despite most people understanding the good will behind public health policies, one must not forget it is individuals we are supporting and that their personal circumstances may affect how they perceive and comply with these policies. Consumers more than ever need help to make sense of the uncertainty and their situation and we need to help them navigate the best option in a world that is constantly evolving.

Patient administrative burden in the US health care system.

OBJECTIVE: To assess the prevalence of patient administrative tasks and whether they are associated with delayed and/or foregone care. DATA SOURCE: March 2019 Health Reform Monitoring Survey. STUDY DESIGN: We assess the prevalence of five common patient administrative tasks-scheduling, obtaining information, prior authorizations, resolving billing issues, and resolving premium problems-and associated administrative burden, defined as delayed and/or foregone care. Using multivariate logistic models, we examined the association of demographic characteristics with odds of doing tasks and experiencing burdens. Our outcome variables were five common types of administrative tasks as well as composite measures of any task, any delayed care, any foregone care, and any burden (combined delayed/foregone), respectively. DATA COLLECTION: We developed and administered survey questions to a nationally representative sample of insured, nonelderly adults (n = 4155). PRINCIPAL FINDINGS: The survey completion rate was 62%. Seventy-three percent of respondents reported performing at least one administrative task in the past year. About one in three task-doers, or 24.4% of respondents overall, reported delayed or foregone care due to an administrative task: Adjusted for demographics, disability status had the strongest association with administrative tasks (adjusted odds ratio [OR] 2.91, p < 0.001) and burden (adjusted OR 1.66, p < 0.001). Being a woman was associated with doing administrative tasks (adjusted OR 2.19, p < 0.001). Being a college graduate was associated with performing an administrative task (adjusted OR 2.79, p < 0.001), while higher income was associated with fewer subsequent burdens (adjusted OR 0.55, p < 0.01). CONCLUSIONS: Patients frequently do administrative tasks that can create burdens resulting in delayed/foregone care. The prevalence of delayed/foregone care due to administrative tasks is comparable to similar estimates of cost-related barriers to care. Demographic disparities in burden warrant further attention. Enhancing measurement of patient administrative work and associated burdens may identify opportunities for assessing quality, value, and patient experience.

Evolutionary Overview of Consumer Health Informatics: Bibliometric Study on the Web of Science from 1999 to 2019.

BACKGROUND: Consumer health informatics (CHI) originated in the 1990s. With the rapid development of computer and information technology for health decision making, an increasing number of consumers have obtained health-related information through the internet, and CHI has also attracted the attention of an increasing number of scholars. OBJECTIVE: The aim of this study was to analyze the research themes and evolution characteristics of different study periods and to discuss the dynamic evolution path and research theme rules in a time-series framework from the perspective of a strategy map and a data flow in CHI. METHODS: The Web of Science core collection database of the Institute for Scientific Information was used as the data source to retrieve relevant articles in the field of CHI. SciMAT was used to preprocess the literature data and construct the overlapping map, evolution map, strategic diagram, and cluster network characterized by keywords. Besides, a bibliometric analysis of the general characteristics, the evolutionary characteristics of the theme, and the evolutionary path of the theme was conducted. RESULTS: A total of 986 articles were obtained after the retrieval, and 931 articles met the document-type requirement. In the past 21 years, the number of articles increased every year, with a remarkable growth after 2015. The research content in 4 different study periods formed the following 38 themes: patient education, medicine, needs, and bibliographic database in the 1999-2003 study period; world wide web, patient education, eHealth, patients, medication, terminology, behavior, technology, and disease in the 2004-2008 study period; websites, information seeking, physicians, attitudes, technology, risk, food labeling, patient, strategies, patient education, and eHealth in the 2009-2014 study period; and electronic medical records, health information seeking, attitudes, health communication, breast cancer, health literacy, technology, natural language processing, user-centered design, pharmacy, academic libraries, costs, internet utilization, and online health information in the 2015-2019 study period. Besides, these themes formed 10 evolution paths in 3 research directions: patient education and intervention, consumer demand attitude and behavior, and internet information technology application. CONCLUSIONS: Averaging 93 publications every year since 2015, CHI research is in a rapid growth period. The research themes mainly focus on patient education, health information needs, health information search behavior, health behavior intervention, health literacy, health information technology, eHealth, and other aspects. Patient education and intervention research, consumer demand, attitude, and behavior research comprise the main theme evolution path, whose evolution process has been relatively stable. This evolution path will continue to become the research hotspot in this field. Research on the internet and information technology application is a secondary theme evolution path with development potential.

Development of an Instrument for Assessing the Maturity of Citizens for Consumer Health Informatics in Developing Countries: The Case of Chile, Ghana, and Kosovo.

OBJECTIVE: We aimed to develop a survey instrument to assess the maturity level of consumer health informatics (ConsHI) in low-middle income countries (LMIC). METHODS: We deduced items from unified theory of acceptance and use of technology (UTAUT), UTAUT2, patient activation measure (PAM), and ConsHI levels to constitute a pilot instrument. We proposed a total of 78 questions consisting of 14 demographic and 64 related maturity variables using an iterative process. We used a multistage convenient sampling approach to select 351 respondents from all three countries. RESULTS: Our results supported the earlier assertion that mobile devices and technology are standard today than ever, thus confirming that mobile devices have become an essential part of human activities. We used the Wilcoxon Signed-Rank Test (WSRT) and item response theory (IRT) to reduce the ConsHI-related items from 64 to 43. The questionnaire consisted of 10 demographic questions and 43 ConsHI relevant questions on the maturity of citizens for ConsHI in LMIC. Also, the results supported some moderators such as age and gender. Additionally, more demographic items such as marital status, educational level, and location of respondents were validated using IRT and WSRT. CONCLUSION: We contend that this is the first composite instrument for assessing the maturity of citizens for ConsHI in LMIC. Specifically, it aggregates multiple theoretical models from information systems (UTAUT and UTAUT2) and health (PAM) and the ConsHI level.

Patient-Reported Outcomes in Cardiovascular Trials.

Patient-reported outcomes (PROs) are reports of a person's health status that provide a global perspective of patient well-being. PROs can be classified into 4 primary domains: global, mental, physical, and social health. In this descriptive review, we focus on how PROs can be used in cardiac clinical trials, with an emphasis on cardiac surgical trials for patients with coronary heart disease and heart failure. We also highlight ongoing challenges and provide specific suggestions and novel opportunities to advance cardiac clinical trials. Current challenges include the long-term measurement of PROs in clinical trials beyond 1 year, inconsistency in the choice of the outcome measures among studies, and the lack of measurement of PROs across multiple domains. Opportunities for advancement include measuring PROs using consumer health informatics tools, including returning information back to participants in formats that they can understand using visualization. Future opportunities include quantifying cohort-specific minimal clinically important differences for PROs.

Informatics-Supported Diabetes Prevention Programming in West Virginia.

Addressing diabetes, prediabetes, and related health conditions such as high blood pressure, high cholesterol, obesity, and physical inactivity are critical public health priorities for the United States, particularly West Virginia. Preventing chronic conditions through early identification of risk and intervention to reduce risk is essential. Primary care and community-based programs need a more connected informatics system by which they work in tandem to identify, refer, treat, and track target populations. This case study in quality improvement examines the effectiveness of national diabetes prevention programming in West Virginia via the West Virginia Health Connection initiative, which was designed to provide such an informatics structure. Cohort analysis reveals an average weight loss of 13.6 pounds-or 6.3 percent total body weight loss-per person. These changes represent decreased risk of diabetes incidence and increased healthcare savings. Lessons learned are applicable to other areas aiming to build and sustain a data-informed health analytics network.

Implementation methodology from a social systems informatics and engineering perspective applied to a parenting training program.

OBJECTIVE: For implementation of an evidence-based program to be effective, efficient, and equitable across diverse populations, we propose that researchers adopt a systems approach that is often absent in efficacy studies. To this end, we describe how a computer-based monitoring system can support the delivery of the New Beginnings Program (NBP), a parent-focused evidence-based prevention program for divorcing parents. METHOD: We present NBP from a novel systems approach that incorporates social system informatics and engineering, both necessary when utilizing feedback loops, ubiquitous in implementation research and practice. Examples of two methodological challenges are presented: how to monitor implementation, and how to provide feedback by evaluating system-level changes due to implementation. RESULTS: We introduce and relate systems concepts to these two methodologic issues that are at the center of implementation methods. We explore how these system-level feedback loops address effectiveness, efficiency, and equity principles. These key principles are provided for designing an automated, low-burden, low-intrusive measurement system to aid fidelity monitoring and feedback that can be used in practice. DISCUSSION: As the COVID-19 pandemic now demands fewer face-to-face delivery systems, their replacement with more virtual systems for parent training interventions requires constructing new implementation measurement systems based on social system informatics approaches. These approaches include the automatic monitoring of quality and fidelity in parent training interventions. Finally, we present parallels of producing generalizable and local knowledge bridging systems science and engineering method. This comparison improves our understanding of system-level changes, facilitates a program's implementation, and produces knowledge for the field. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Role of Participatory Health Informatics in Detecting and Managing Pandemics: Literature Review.

OBJECTIVES: Using participatory health informatics (PHI) to detect disease outbreaks or learn about pandemics has gained interest in recent years. However, the role of PHI in understanding and managing pandemics, citizens' role in this context, and which methods are relevant for collecting and processing data are still unclear, as is which types of data are relevant. This paper aims to clarify these issues and explore the role of PHI in managing and detecting pandemics. METHODS: Through a literature review we identified studies that explore the role of PHI in detecting and managing pandemics. Studies from five databases were screened: PubMed, CINAHL (Cumulative Index to Nursing and Allied Health Literature), IEEE Xplore, ACM (Association for Computing Machinery) Digital Library, and Cochrane Library. Data from studies fulfilling the eligibility criteria were extracted and synthesized narratively. RESULTS: Out of 417 citations retrieved, 53 studies were included in this review. Most research focused on influenza-like illnesses or COVID-19 with at least three papers on other epidemics (Ebola, Zika or measles). The geographic scope ranged from global to concentrating on specific countries. Multiple processing and analysis methods were reported, although often missing relevant information. The majority of outcomes are reported for two application areas: crisis communication and detection of disease outbreaks. CONCLUSIONS: For most diseases, the small number of studies prevented reaching firm conclusions about the utility of PHI in detecting and monitoring these disease outbreaks. For others, e.g., COVID-19, social media and online search patterns corresponded to disease patterns, and detected disease outbreak earlier than conventional public health methods, thereby suggesting that PHI can contribute to disease and pandemic monitoring.

[Considerations of Providing the Public with Health Information].

Nowadays, approximately 90 percent of the general population in Japan uses the internet and many of them look for health-related information. However, there have been serious concerns about the contents and credibility of these information. Among "mixture of wheat and chaff", information provided by the public domains are expected as accurate and reliable ones. This article reviews five public websites that provide health or health care information for users including the general population: Minds by the Japan Council for Quality Health Care, e-health net, evidence-based Japanese Integrative Medicine (eJIM), Cancer Information Service by the National Cancer Center, Center for Cancer Control and Information Services, Information system on safety and effectiveness for health foods (HF net) by National Institute of Health and Nutrition. These websites show their running policy transparently and have constructed collaborative relationships with each domain experts, and from the people who are not related with the healthcare field including patients in some cases. Each of them is content-rich and well-organized as an individual unit. The organizations that run these websites share the common goal that provides the general population with quality health-related information, however, cooperation have been limited. To increase awareness among the public, it is worthy considering joint efforts of these organizations in future.

Evaluation of internet derived patient information for Acute Pancreatitis.

INTRODUCTION: Possibly In the UK there are currently over 26,000 patients admitted to hospital for acute pancreatitis per annum and the incidence is rising. 55% of patients consult the internet for information regarding their medical condition. As the number of people using the internet has increased 57% since 2006, it is increasingly important for medical professionals to direct patients to accurate online sources of information. This paper aims to evaluate the quality of information available online for acute pancreatitis. METHODS: The term 'acute pancreatitis' was searched using http://www.google.com, http://www.bing.com, and http://www.yahoo.com. The top 10 results of each of these websites were assessed using the University of Michigan consumer health website evaluation checklist. RESULTS: Of the 30 websites found, 4 were excluded from the evaluation. Within the 26 evaluated websites there was high variability in website quality. However, the authors would have used 18 of the websites again for the purpose of finding out information on acute pancreatitis. 15 websites had a named author of which 11 displayed their credentials. 8 of the websites had been updated within the last year. 10 websites displayed a bias or conflict of interest. Generally, the layout and design of websites was good, however 7 of the websites contained distracting graphics and 9 of the websites had no search facility. DISCUSSION: Doctors should give patients the information they want and need. With a high percentage of patients using the internet, medical professionals should recommend good quality websites to their patients. Engaging in this process could improve the consenting process as patients would be better informed. Good quality websites allows patients to explore conditions by themselves, with a re-consultation facilitating further discussion. Failure to engage in internet-based information risks patients making misinformed decisions due to bias and conflict of interest.

Using Narrative Evidence to Convey Health Information on Social Media: The Case of COVID-19.

During disease outbreaks or pandemics, policy makers must convey information to the public for informative purposes (eg, morbidity or mortality rates). They must also motivate members of the public to cooperate with the guidelines, specifically by changing their usual behavior. Policy makers have traditionally adopted a didactic and formalistic stance by conveying dry, statistics-based health information to the public. They have not yet considered the alternative of providing health information in the form of narrative evidence, using stories that address both cognitive and emotional aspects. The aim of this viewpoint paper is to introduce policy makers to the advantages of using narrative evidence to provide health information during a disease outbreak or pandemic such as COVID-19. Throughout human history, authorities have tended to employ apocalyptic narratives during disease outbreaks or pandemics. This viewpoint paper proposes an alternative coping narrative that includes the following components: segmentation; barrier reduction; role models; empathy and support; strengthening self-efficacy, community efficacy, and coping tools; preventing stigmatization of at-risk populations; and communicating uncertainty. It also discusses five conditions for using narrative evidence to produce an effective communication campaign on social media: (1) identifying narratives that reveal the needs, personal experiences, and questions of different subgroups to tailor messaging to produce targeted behavioral change; (2) providing separate and distinct treatment of each information unit or theory that arises on social networks; (3) identifying positive deviants who found creative solutions for stress during the COVID-19 crisis not found by other members of the community; (4) creating different stories of coping; and (5) maintaining a dialogue with population subgroups (eg, skeptical and hesitant groups). The paper concludes by proposing criteria for evaluating the effectiveness of a narrative.