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BACKGROUND: During health emergencies, effective infodemic management has become a paramount challenge. A new era marked by a rapidly changing information ecosystem, combined with the widespread dissemination of misinformation and disinformation, has magnified the complexity of the issue. For infodemic management measures to be effective, acceptable, and trustworthy, a robust framework of ethical considerations is needed. OBJECTIVE: This systematic scoping review aims to identify and analyze ethical considerations and procedural principles relevant to infodemic management, ultimately enhancing the effectiveness of these practices and increasing trust in stakeholders performing infodemic management practices with the goal of safeguarding public health. METHODS: The review involved a comprehensive examination of the literature related to ethical considerations in infodemic management from 2002 to 2022, drawing from publications in PubMed, Scopus, and Web of Science. Policy documents and relevant material were included in the search strategy. Papers were screened against inclusion and exclusion criteria, and core thematic areas were systematically identified and categorized following PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. We analyzed the literature to identify substantive ethical principles that were crucial for guiding actions in the realms of infodemic management and social listening, as well as related procedural ethical principles. In this review, we consider ethical principles that are extensively deliberated upon in the literature, such as equity, justice, or respect for autonomy. However, we acknowledge the existence and relevance of procedural practices, which we also consider as ethical principles or practices that, when implemented, enhance the efficacy of infodemic management while ensuring the respect of substantive ethical principles. RESULTS: Drawing from 103 publications, the review yielded several key findings related to ethical principles, approaches, and guidelines for practice in the context of infodemic management. Community engagement, empowerment through education, and inclusivity emerged as procedural principles and practices that enhance the quality and effectiveness of communication and social listening efforts, fostering trust, a key emerging theme and crucial ethical principle. The review also emphasized the significance of transparency, privacy, and cybersecurity in data collection. CONCLUSIONS: This review underscores the pivotal role of ethics in bolstering the efficacy of infodemic management. From the analyzed body of literature, it becomes evident that ethical considerations serve as essential instruments for cultivating trust and credibility while also facilitating the medium-term and long-term viability of infodemic management approaches.

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BACKGROUND: The chronic inflammatory skin disease hidradenitis suppurativa (HS) leads to severe pain and reduced quality of life. Nonetheless, it often takes years until a correct diagnosis is made. In this analysis, disease-related experiences and pathways of patients with HS were investigated and compared with the physicians' perspective. METHODS: Public posts on forums and social media as well as results of a survey conducted among dermatologists and their patients on the actual medical care reality of HS in Germany were analysed. Furthermore, claims data from German health insurance companies were evaluated. RESULTS: Patients with HS suffer from a 43.3% reduction in working ability. Dermatology (26.5%) was the most frequently consulted specialty, with HS diagnosed predominantly in the inpatient setting (43.8%). Abscesses were described as the most frequent alternative diagnosis in HS patients (53.2%). Patient-reported changes of physicians in dermatology (34.1%) and surgery (42.4%) occurred predominantly within the specialty. Dermatology received most referrals from general practitioners (67.1%), but only 12.1% from surgeons. CONCLUSION: There is an urgent need to reduce the delay in diagnosis and the prolonged burden of disease in patients with HS. Therefore, awareness of the disease, its detection and treatment which goes beyond dermatology should be promoted, if possible as part of medical studies.

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Despite challenges related to the data quality, representativeness, and accuracy of artificial intelligence-driven tools, commercially available social listening platforms have many of the attributes needed to be used for digital public health surveillance of human papillomavirus vaccination misinformation in the online ecosystem.

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BACKGROUND: Systemic lupus erythematosus (SLE) is a chronic autoimmune inflammatory disease affecting various organs with a wide range of clinical manifestations. Cutaneous lupus erythematosus (CLE) can manifest as a feature of SLE or an independent skin ailment. Health-related quality of life (HRQoL) is frequently compromised in individuals living with lupus. Understanding patients' perspectives when living with a disease is crucial for effectively meeting their unmet needs. Social listening is a promising new method that can provide insights into the experiences of patients living with their disease (lupus) and leverage these insights to inform drug development strategies for addressing their unmet needs. OBJECTIVE: The objective of this study is to explore the experience of patients living with SLE and CLE, including their disease and treatment experiences, HRQoL, and unmet needs, as discussed in web-based social media platforms such as blogs and forums. METHODS: A retrospective exploratory social listening study was conducted across 13 publicly available English-language social media platforms from October 2019 to January 2022. Data were processed using natural language processing and knowledge graph tagging technology to clean, format, anonymize, and annotate them algorithmically before feeding them to Pharos, a Semalytix proprietary data visualization and analysis platform, for further analysis. Pharos was used to generate descriptive data statistics, providing insights into the magnitude of individual patient experience variables, their differences in the magnitude of variables, and the associations between algorithmically tagged variables. RESULTS: A total of 45,554 posts from 3834 individuals who were algorithmically identified as patients with lupus were included in this study. Among them, 1925 (authoring 5636 posts) and 106 (authoring 243 posts) patients were identified as having SLE and CLE, respectively. Patients frequently mentioned various symptoms in relation to SLE and CLE including pain, fatigue, and rashes; pain and fatigue were identified as the main drivers of HRQoL impairment. The most affected aspects of HRQoL included "mobility," "cognitive capabilities," "recreation and leisure," and "sleep and rest." Existing pharmacological interventions poorly managed the most burdensome symptoms of lupus. Conversely, nonpharmacological treatments, such as exercise and meditation, were frequently associated with HRQoL improvement. CONCLUSIONS: Patients with lupus reported a complex interplay of symptoms and HRQoL aspects that negatively influenced one another. This study demonstrates that social listening is an effective method to gather insights into patients' experiences, preferences, and unmet needs, which can be considered during the drug development process to develop effective therapies and improve disease management.

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The early COVID-19 vaccine rollout in Sudan experienced a gender disparity in vaccine uptake, with women accounting for less than 40% of vaccinations after four months of vaccine access. Initial analysis revealed that demand generation approaches were not sufficiently tailored to address the challenges and concerns of women. Using real-time social media monitoring, also known as social listening, to understand this inequity, we used an analytical tool called "Talkwalker" to track public sentiment and engagement regarding vaccination on social media platforms. The data captured subsequently informed a gender-responsive messaging campaign on social media that directly addressed specific concerns of Sudanese women. Within one week of the campaign's onset in September 2021, we observed a 144% increase in women's COVID-19 related social media engagement. Subsequent campaigns further enhanced women's engagement from 31% to between 35%-47%. Two subsequent campaigns in January and February/March 2022 were complemented with in-person activities, such as group meetings with community members and home visits by health promoters. Women's vaccination rates increased by 9% while the first two campaigns were live. System constraints hindered data linkages for the third campaign. These findings demonstrate the value of integrating real-time feedback with large-scale social media campaigns and the potential of linking online and offline strategies to further refine interventions, particularly in a conflict-prone and low-income country context. Our experience reinforces the notion that "one size does not fit all" when it comes to health-related communication. Responses should be tailored, contextualized, and person-centered, particularly in addressing concerns unique to women.

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BACKGROUND: During the COVID-19 pandemic, the field of infodemic management has grown in response to urgent global need. Social listening is the first step in managing the infodemic, and many organizations and health systems have implemented processes. Social media analysis tools have traditionally been developed for commercial purposes, rather than public health, and little is known of the experiences and needs of those professionals using them for infodemic management. METHODS: We developed a cross sectional survey and distributed through global infodemic management networks between December 2022 and February 2023. Questions were structured over four sections related to work-practice and user needs and did not collect any personal details from participants. Descriptive analysis was conducted on the study results. Qualitative analysis was used to categorise and understand answers to open-text questions. RESULTS: There were 417 participants, 162/417 who completed all survey questions, and 255/417 who completed some, all responses are included in analysis. Respondents came from all global regions and a variety of workplaces. Participants had an average of 4.4 years' experience in the analysis of social media for public health. COVID-19 was the most common health issue people had conducted social media analysis for. Results reveal a range of training, technical capacity, and support needs. CONCLUSIONS: This paper is the first we are aware of to seek and describe the needs of those using social media analysis platforms for public health purposes since the start of the COVID-19 pandemic. There are key areas for future work and research, including addressing the training, capacity building and leadership needs of those working in this space, and the need to facilitate easier access to better platforms for performing social media analysis.

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INTRODUCTION: This study aimed to characterize patient-reported outcomes from social media conversations in the gout community. The impact of management strategy differences on the community's emotional states was explored. METHODS: We analyzed two social media sources using a variety of natural language processing techniques. We isolated conversations with a high probability of discussing disease management (score > 0.99). These conversations were stratified by management type: proactive or reactive. The polarity (positivity/negativity) of language and emotions conveyed in statements shared by community members was assessed by management type. RESULTS: Among the statements related to management, reactive management (e.g., urgent care) was mentioned in 0.5% of statements, and proactive management (e.g., primary care) was mentioned in 0.6% of statements. Reactive management statements had a significantly larger proportion of negative words (59%) than did proactive management statements (44%); "fear" occurred more frequently with reactive statements, whereas "trust" predominated in proactive statements. Allopurinol was the most common medication in proactive management statements, whereas reactive management had significantly higher counts of prednisone/steroid mentions. CONCLUSIONS: A unique aspect of examining gout-related social media conversations is the ability to better understand the intersection of clinical management and emotional impacts in the gout community. The effect of social media statements was significantly stratified by management type for gout community members, where proactive management statements were characterized by more positive language than reactive management statements. These results suggest that proactive disease management may result in more positive mental and emotional experiences in patients with gout.

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BACKGROUND: The increased availability of web-based medical information has encouraged patients with chronic pain to seek health care information from multiple sources, such as consultation with health care providers combined with web-based information. The type and quality of information that is available on the web is very heterogeneous, in terms of content, reliability, and trustworthiness. To date, no studies have evaluated what information is available about neuromodulation on the web for patients with chronic pain. OBJECTIVE: This study aims to explore the type, quality, and content of web-based information regarding spinal cord stimulation (SCS) for chronic pain that is freely available and targeted at health care consumers. METHODS: The social listening tool Awario was used to search Facebook (Meta Platforms, Inc), Twitter (Twitter, Inc), YouTube (Google LLC), Instagram (Meta Platforms, Inc), blogs, and the web for suitable hits with "pain" and "neuromodulation" as keywords. Quality appraisal of the extracted information was performed using the DISCERN instrument. A thematic analysis through inductive coding was conducted. RESULTS: The initial search identified 2174 entries, of which 630 (28.98%) entries were eventually withheld, which could be categorized as web pages, including news and blogs (114/630, 18.1%); Reddit (Reddit, Inc) posts (32/630, 5.1%); Vimeo (Vimeo, Inc) hits (38/630, 6%); or YouTube (Google LLC) hits (446/630, 70.8%). Most posts originated in the United States (519/630, 82.4%). Regarding the content of information, 66.2% (383/579) of the entries discussed (fully discussed or partially discussed) how SCS works. In total, 55.6% (322/579) of the entries did not elaborate on the fact that there may be >1 potential treatment choice and 47.7% (276/579) did not discuss the influence of SCS on the overall quality of life. The inductive coding revealed 4 main themes. The first theme of pain and the burden of pain (1274/8886, 14.34% coding references) explained about pain, pain management, individual impact of pain, and patient experiences. The second theme included neuromodulation as a treatment approach (3258/8886, 36.66% coding references), incorporating the background on neuromodulation, patient-centered care, SCS therapy, and risks. Third, several device-related aspects (1722/8886, 19.38% coding references) were presented. As a final theme, patient benefits and testimonials of treatment with SCS (2632/8886, 29.62% coding references) were revealed with subthemes regarding patient benefits, eligibility, and testimonials and expectations. CONCLUSIONS: Health care consumers have access to web-based information about SCS, where details about the surgical procedures, the type of material, working mechanisms, risks, patient expectations, testimonials, and the potential benefits of this therapy are discussed. The reliability, trustworthiness, and correctness of web-based sources should be carefully considered before automatically relying on the content.

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ISSUE ADDRESSED: The COVID-19 pandemic has seen evidence and advice evolve quickly. Since the start of the pandemic there has been confusion and concern about breastfeeding and COVID-19, and advice for this group has at times been contradictory. The volume of information on social media has exacerbated this. This study aimed to understand breastfeeding-related COVID-19 information sharing on social media during the global and Australian vaccine roll-out. METHODS: The CrowdTangle platform was used to source data from December 2020 to December 2021. Posts were categorised to intent and source and mapped to a timeline of pandemic-related events and announcements. Descriptive analysis was used to understand data distribution patterns and qualitative analysis for post-intent. RESULTS: A total of 945 posts were included. Post-interactions ranged from 0 to 6500. Vaccine-related posts were the highest in number and increased over time. Non-profit organisations shared the highest number of posts (n = 241), but interactions were highest with personal and government accounts. Peaks in posts and interactions mapped to key pandemic-related announcements and events. CONCLUSION: These results describe the breastfeeding and COVID-19 related content shared on Facebook over 13 months, and the associated interactions. Breastfeeding is an important public health issue and breastfeeding women have experienced conflicting and confusing breastfeeding-related information during the COVID-19 pandemic. Better understanding of social media usage, and the monitoring of changes in usage, as an emergency unfolds, can help target communications. This article adds to the evidence in understanding user reactions to COVID-19 related breastfeeding information on social media. SO WHAT?: Social listening is an important part of health communication and infodemic management. Understanding how users react to and engage with COVID-19 related breastfeeding information on social media can help to understand how the general public perceives and responds to health advice and other information being shared.

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INTRODUCTION: Throughout the COVID-19 pandemic, underserved populations, such as racial and ethnic minorities, were disproportionately impacted by illness, hospitalization, and death. Equity in clinical trials means that the participants in clinical trials represent the people who are most likely to have the health condition and need the treatment that the trial is testing. Infodemiology approaches examining user conversations on social media platforms have the potential to elucidate specific barriers and challenges related to clinical trial participation, including among racial and ethnic minority populations. MATERIALS AND METHODS: The study retrospectively collected and analyzed user question and answer posts from Quora in October 2021 using an inductive content coding approach. We also examined user's publicly available profile metadata to identify racial and ethnic minority users to capture their experiences, attitudes, topics, and discussions of barriers to COVID-19 vaccine trials. RESULTS: A total of 1073 questions and 7479 answers were collected. A total of 763 questions and 2548 answers were identified as related to COVID-19 vaccine clinical trials. The majority of these online interactions focused on asking questions and sharing knowledge and opinions about COVID-19 vaccine trials, including major topics related to: (a) interpreting whether clinical trial results could be trusted; (b) questions about vaccine efficacy and safety; (c) understanding trial design, regulatory considerations, and vaccine platforms; and (d) questions about trial enrollment, length, and adequate representation. Additionally, four major barriers discussed included: (i) disagreement from users regarding whether clinical trials require representation from different racial and ethnic minorities; (ii) concerns regarding the safety of trials when participating; (iii) lack of knowledge on how to participate in a trial; and (iv) questions of whether participants could withdraw from a trial to access an approved COVID-19 vaccine. CONCLUSIONS: Our study found active user discussions related to COVID-19 vaccine clinical trials on Quora, including those specific to minority health topics and those posted by a smaller group of self-identified racial and ethnic minority online users. Results from this study can help identify barriers to participation among the general public and underrepresented groups while also supporting the design of future outreach strategies to help with recruitment and inclusive trial participation.

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BACKGROUND: Overcoming gender inequities is a global priority recognized as essential for improved health and human development. Gender-based violence (GBV) is an extreme manifestation of gender inequities enacted in real-world and internet-based environments. In Nigeria, GBV has come to the forefront of attention since 2020, when a state of emergency was declared due to increased reporting of sexual violence. Understanding GBV-related social narratives is important to design public health interventions. OBJECTIVE: We explore how gender-related internet-based conversations in Nigeria specifically related to sexual consent (actively agreeing to sexual behavior), lack of consent, and slut-shaming (stigmatization in the form of insults based on actual or perceived sexuality and behaviors) manifest themselves and whether they changed between 2017 and 2022. Additionally, we explore what role events or social movements have in shaping gender-related narratives in Nigeria. METHODS: Social listening was carried out on 12,031 social media posts (Twitter, Facebook, forums, and blogs) and almost 2 million public searches (Google and Yahoo search engines) between April 2017 and May 2022. The data were analyzed using natural language processing to determine the most salient conversation thematic clusters, qualitatively analyze time trends in discourse, and compare data against selected key events. RESULTS: Between 2017 and 2022, internet-based conversation about sexual consent increased 72,633%, from an average 3 to 2182 posts per month, while slut-shaming conversation (perpetrating or condemning) shrunk by 9%, from an average 3560 to 3253 posts per month. Thematic analysis shows conversation revolves around the objectification of women, poor comprehension of elements of sexual consent, and advocacy for public education about sexual consent. Additionally, posters created space for sexual empowerment and expressions of sex positivity, pushing back against others who weaponize posts in support of slut-shaming narrative. Time trend analysis shows a greater sense of empowerment in advocating for education around the legal age of consent for sexual activity, calling out double standards, and rejecting slut-shaming. However, analysis of emotions in social media posts shows anger was most prominent in sexual consent (n=1213, 73%) and slut-shaming (n=226, 64%) posts. Organic social movements and key events (#ArewaMeToo and #ChurchToo, the #SexforGrades scandal, and the #BBNaija television program) played a notable role in sparking discourse related to sexual consent and slut-shaming. CONCLUSIONS: Social media narratives are significantly impacted by popular culture events, mass media programs, social movements, and micro influencers speaking out against GBV. Hashtags, media clips, and other content can be leveraged effectively to spread awareness and spark conversation around evolving gender norms. Public health practitioners and other stakeholders including policymakers, researchers, and social advocates should be prepared to capitalize on social media events and discourse to help shape the conversation in support of a normative environment that rejects GBV in all its forms.

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Background: Social media is used as a source of information and platform to discuss health care; however, there is little research on discussion of telehealth in social media. Past research has looked at individual platforms, but a comparison of discussion on two platforms (Reddit and Twitter) has not been performed. Understanding telehealth-related social media discourse and the differences between platforms may provide insights into how telehealth is characterized online and which platforms provide patient perspectives. The COVID-19 pandemic provides a unique case study to examine how social media users approached both Reddit and Twitter during an international health crisis. This study used natural language processing tools and two social media platforms to (1) characterize and contrast each platform's telehealth-related posts according to themes and (2) assess the frequency of telehealth and telehealth-related terms posts before and during the onset of the COVID-19 pandemic. Methods: We collected 6 years (2016 through 2021) of social media posts from Twitter and Reddit. The themes of the corpus were extracted using hashtags, subreddits, and Latent Dirichlet Allocation (LDA) and were analyzed using descriptive statistics. Results: Both Twitter and Reddit showed exponential growth in the use of the term "telehealth" and telehealth-related terms in early 2020. The use of telehealth-related terms and discussion of COVID-19 coincided in both social media sites; however, other themes were discussed, including how to use telehealth. Reddit LDA clusters showed greatest usage of "telehealth" when associated with using or suggesting telehealth for receiving therapy, counseling, or psychoanalysis while Twitter focused on sharing telehealth news, products, and services. Discussion: Twitter and Reddit had extensive growth in the use of telehealth-related terms after the COVID-19 pandemic. Twitter and Reddit showed themes connecting COVID-19 to telehealth, especially in reference to services, therapy, and counseling, however, Reddit had more discussion suggesting use of telehealth services or requesting peer insights into how to use telehealth as compared with Twitter, which appeared more focused on telehealth as a business or product.

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BACKGROUND: During the COVID-19 pandemic, social listening programs across digital channels have become an integral part of health preparedness and response planning, allowing to capture and address questions, information needs, and misinformation shared by users. This study identifies key social listening trends around COVID-19 vaccines in Eastern and Southern Africa and analyses how online conversations about this issue evolved over time. METHODS: A taxonomy developed and refined in collaboration with social and behaviour change teams was used to filter online conversations into nine subtopic categories. The taxonomy was applied to online content tracked in 21 countries in Eastern and Southern Africa over the period December 1, 2020-December 31, 2021. Metrics captured included volume of posts or articles and related user engagement. Qualitative analysis of content was conducted to identify key concerns, information voids and misinformation. RESULTS: Over 300,000 articles and posts about COVID-19 vaccines shared by users or outlets geolocated in the region were analysed. These results generated over 14 million engagements on social media and digital platforms. The analysis shows how conversations about access and availability of vaccines represented the largest share of engagement over the course of the period. Conversations about vaccine effectiveness and safety represented the second and third largest share of engagement, with peaks observed in August and November 2021. Online interest in childhood vaccination increased over time as vaccine eligibility criteria expanded in some countries in the region. Conversations mentioning mandates and certificates peaked in the last quarter of 2021, as governments as private sector entities expanded vaccine requirements. CONCLUSIONS: Findings from this study show the importance of monitoring conversation trends over time and adjust social listening data collection systems to include emerging topics. The study also points to the need to consider concerns, information voids and misinformation around effectiveness and safety of vaccines in the context of overall concern for vaccine availability and access in Eastern and Southern Africa. This is fundamental to inform social and behaviour change strategies that promote vaccine demand effectively, without increasing public frustration over vaccine availability challenges and downplaying concerns around vaccine equity.

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BACKGROUND: Amid the COVID-19 pandemic, there has been a need for rapid social understanding to inform infodemic management and response. Although social media analysis platforms have traditionally been designed for commercial brands for marketing and sales purposes, they have been underused and adapted for a comprehensive understanding of social dynamics in areas such as public health. Traditional systems have challenges for public health use, and new tools and innovative methods are required. The World Health Organization Early Artificial Intelligence-Supported Response with Social Listening (EARS) platform was developed to overcome some of these challenges. OBJECTIVE: This paper describes the development of the EARS platform, including data sourcing, development, and validation of a machine learning categorization approach, as well as the results from the pilot study. METHODS: Data for EARS are collected daily from web-based conversations in publicly available sources in 9 languages. Public health and social media experts developed a taxonomy to categorize COVID-19 narratives into 5 relevant main categories and 41 subcategories. We developed a semisupervised machine learning algorithm to categorize social media posts into categories and various filters. To validate the results obtained by the machine learning-based approach, we compared it to a search-filter approach, applying Boolean queries with the same amount of information and measured the recall and precision. Hotelling T2 was used to determine the effect of the classification method on the combined variables. RESULTS: The EARS platform was developed, validated, and applied to characterize conversations regarding COVID-19 since December 2020. A total of 215,469,045 social posts were collected for processing from December 2020 to February 2022. The machine learning algorithm outperformed the Boolean search filters method for precision and recall in both English and Spanish languages (P<.001). Demographic and other filters provided useful insights on data, and the gender split of users in the platform was largely consistent with population-level data on social media use. CONCLUSIONS: The EARS platform was developed to address the changing needs of public health analysts during the COVID-19 pandemic. The application of public health taxonomy and artificial intelligence technology to a user-friendly social listening platform, accessible directly by analysts, is a significant step in better enabling understanding of global narratives. The platform was designed for scalability; iterations and new countries and languages have been added. This research has shown that a machine learning approach is more accurate than using only keywords and has the benefit of categorizing and understanding large amounts of digital social data during an infodemic. Further technical developments are needed and planned for continuous improvements, to meet the challenges in the generation of infodemic insights from social media for infodemic managers and public health professionals.

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BACKGROUND: To respond to the need to establish infodemic management functions at the national public health institute in Germany (Robert Koch Institute, RKI), we explored and assessed available data sources, developed a social listening and integrated analysis framework, and defined when infodemic management functions should be activated during emergencies. OBJECTIVE: We aimed to establish a framework for social listening and integrated analysis for public health in the German context using international examples and technical guidance documents for infodemic management. METHODS: This study completed the following objectives: identified (potentially) available data sources for social listening and integrated analysis; assessed these data sources for their suitability and usefulness for integrated analysis in addition to an assessment of their risk using the RKI's standardized data protection requirements; developed a framework and workflow to combine social listening and integrated analysis to report back actionable infodemic insights for public health communications by the RKI and stakeholders; and defined criteria for activating integrated analysis structures in the context of a specific health event or health emergency. RESULTS: We included and classified 38% (16/42) of the identified and assessed data sources for social listening and integrated analysis at the RKI into 3 categories: social media and web-based listening data, RKI-specific data, and infodemic insights. Most data sources can be analyzed weekly to detect current trends and narratives and to inform a timely response by reporting insights that include a risk assessment and scalar judgments of different narratives and themes. CONCLUSIONS: This study identified, assessed, and prioritized a wide range of data sources for social listening and integrated analysis to report actionable infodemic insights, ensuring a valuable first step in establishing and operationalizing infodemic management at the RKI. This case study also serves as a roadmap for others. Ultimately, once operational, these activities will inform better and targeted public health communication at the RKI and beyond.

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The WHO Early AI-Supported Response with Social Listening (EARS) platform was developed to help inform infodemic response during the COVID-19 pandemic. There was continual monitoring and evaluation of the platform and feedback from end-users was sought on a continual basis. Iterations were made to the platform in response to user needs, including the introduction of new languages and countries, and additional features to better enable more fine-grained and rapid analysis and reporting. The platform demonstrates how a scalable, adaptable system can be iterated upon to continue to support those working in emergency preparedness and response.

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The COVID-19 infodemic is an overwhelming amount of information that has challenged pandemic communication and epidemic response. WHO has produced weekly infodemic insights reports to identify questions, concerns, information voids expressed and experienced by people online. Publicly available data was collected and categorized to a public health taxonomy to enable thematic analysis. Analysis showed three key periods of narrative volume peaks. Understanding how conversations change over time can help inform future infodemic preparedness and prevention planning.

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Childhood vaccines are a safe, effective, and essential component of any comprehensive public health system. Successful and complete child immunization requires sensitivity and responsiveness to community needs and concerns while reducing barriers to access and providing respectful quality services. Community demand for immunization is influenced by multiple complex factors, involving attitudes, trust, and the dynamic relationship between caregivers and health workers. Digital health interventions have the potential to help reduce barriers and enhance opportunities for immunization access, uptake, and demand in low- and middle-income countries. But with limited evidence and many interventions to choose from, how do decision makers identify promising and appropriate tools? Early evidence and experiences with digital health interventions for immunization demand are presented in this viewpoint to help stakeholders make decisions, guide investment, coordinate efforts, as well as design and implement digital health interventions to support vaccine confidence and demand.

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Systemic lupus erythematosus (SLE) is a multisystem autoimmune disease. It is characterized by a broad spectrum of manifestations, depending on the affected organs and the severity of the inflammation at the time of presentation. Despite improvements in management, treatments are required on a chronic, cyclical basis; have high potential for unpleasant side effects; and deliver variable efficacy. Patients require care from multiple specialists, which can be delivered simultaneously and sporadically. Our fragmented health care system further exacerbates the disconnect between intermittent medical care and the lived experiences of patients with SLE. The goals of this research are to (1) assess the current standard of care for patients with SLE through the review of medical literature, including clinical consensus guidelines and systematic reviews; (2) assess the lived experiences of patients with lupus through the review of peer-reviewed literature on social listening, structured interviews, and data available from the open-access digital health platform PatientsLikeMe; and (3) present the perspective that the medical community has an opportunity to acknowledge and review the use of digital health interventions (DHIs) with their patients. The results of this research indicate that patients are incorporating DHIs, such as the internet and social media platforms, as critical components of their care for even the most basic of support. Although patients with SLE are depending on this support to shape their care, it is not considered a primary source of care by clinicians. Integrating the voices of patients brings valuable dimension to understanding the lived experiences of patients with SLE and the impacts of mutually dependent patient needs as patients navigate the disease in daily life. The medical community has a meaningful opportunity to leverage and recommend existing DHIs, such as web-based community platforms and web-based patient registries, at every stage of the patient journey to help patients better manage their condition. This has the potential to proactively build patient trust and well-being, reduce the underreporting of symptoms, increase shared decision-making, inform and shape clinical guidelines and future research, and improve patient outcomes.

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