Background: An infodemic is an overflow of information of varying quality that surges across digital and physical environments during an acute public health event. It leads to confusion, risk-taking, and behaviors that can harm health and lead to erosion of trust in health authorities and public health responses. Owing to the global scale and high stakes of the health emergency, responding to the infodemic related to the pandemic is particularly urgent. Building on diverse research disciplines and expanding the discipline of infodemiology, more evidence-based interventions are needed to design infodemic management interventions and tools and implement them by health emergency responders. Objective: The World Health Organization organized the first global infodemiology conference, entirely online, during June and July 2020, with a follow-up process from August to October 2020, to review current multidisciplinary evidence, interventions, and practices that can be applied to the COVID-19 infodemic response. This resulted in the creation of a public health research agenda for managing infodemics. Methods: As part of the conference, a structured expert judgment synthesis method was used to formulate a public health research agenda. A total of 110 participants represented diverse scientific disciplines from over 35 countries and global public health implementing partners. The conference used a laddered discussion sprint methodology by rotating participant teams, and a managed follow-up process was used to assemble a research agenda based on the discussion and structured expert feedback. This resulted in a five-workstream frame of the research agenda for infodemic management and 166 suggested research questions. The participants then ranked the questions for feasibility and expected public health impact. The expert consensus was summarized in a public health research agenda that included a list of priority research questions. Results: The public health research agenda for infodemic management has five workstreams: (1) measuring and continuously monitoring the impact of infodemics during health emergencies; (2) detecting signals and understanding the spread and risk of infodemics; (3) responding and deploying interventions that mitigate and protect against infodemics and their harmful effects; (4) evaluating infodemic interventions and strengthening the resilience of individuals and communities to infodemics; and (5) promoting the development, adaptation, and application of interventions and toolkits for infodemic management. Each workstream identifies research questions and highlights 49 high priority research questions. Conclusions: Public health authorities need to develop, validate, implement, and adapt tools and interventions for managing infodemics in acute public health events in ways that are appropriate for their countries and contexts. Infodemiology provides a scientific foundation to make this possible. This research agenda proposes a structured framework for targeted investment for the scientific community, policy makers, implementing organizations, and other stakeholders to consider.

Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet

The World Health Organization (WHO) concept of human functioning represents a new way of thinking about health that has wide-ranging consequences. This article explicates this paradigm shift, illustrates its potential impact, and argues that societies can profit by implementing functioning as the third indicator of health, complementing morbidity and mortality. Human functioning integrates biological health (the bodily functions and structures that constitute a person’s intrinsic health capacity) and lived health (a person’s actual performance of activities in interaction with their environment). It is key to valuing health both in relation to individual well-being and societal welfare—operationalizing the United Nations Sustainable Development Goal (SDG) 3 principle that health is a public good. Implementing functioning as defined and conceptualized in the International Classification of Functioning, Disability and Health (ICF) could profoundly benefit practices, research, education, and policy across health systems and health strategies and help integrate health and social systems. It also offers a foundation for reconceptualizing multidisciplinary health sciences and for augmenting epidemiology with information derived from peoples’ lived experiences of health. A new interdisciplinary science field—human functioning sciences—itself holds the promise to integrate research inputs and methods from diverse biomedical and social disciplines to provide a more comprehensive understanding of human health. To realize these opportunities, we must address formidable methodological, implementation, and communication challenges throughout health systems and broader society. This endeavor is vital to orientate health systems toward what matters most to people about health, to unlock the societal economic investment in health that is essential for individual and population-level well-being, and to drive progress toward achieving the SDGs.

Background: Spinal cord injury is a complex chronic health condition that requires individuals to actively self-manage. Therefore, an evidence-based, self-management app would be of value to support individuals with spinal cord injury in the prevention of pressure injuries.Objective: The main objectives of this study were to (1) establish a co-design approach for developing a high-fidelity prototype app for the self-management of individuals with spinal cord injury, (2) design the prototype that resulted from this process, and (3) conduct the first usability assessment of the prototype app.Methods: We adopted a co-design approach to develop an evidence-based app prototype. Starting from a preliminary content model (based on clinical guidelines for the prevention of pressure injuries) and three research-based user personas, we conducted an ideation workshop involving individuals with spinal cord injury and health care professionals. The ideation workshop formed the basis for two consecutive design sprints. The result of this co-design phase was an interactive app prototype. The prototype was evaluated in two rounds of usability testing (N=4 and N=15, respectively) using a combination of qualitative and quantitative methods.Results: The co-design process resulted in a high-fidelity prototype with two key components: a self-management component and a communication component. The final prototype included a combination of features to support individuals with spinal cord injury in the prevention of pressure injuries, namely a smart camera, pressure injury diary, expert consultation, reminders, and knowledge repository. Findings of the usability testing showed that most participants navigated the app fluently with little back and forth navigation and were able to successfully complete a set of assigned tasks. These positive results are supported by the average system usability score achieved (78.5/100; range 47.5-95.0) and our qualitative analysis of the semistructured interviews. Despite an overall positive evaluation of the app prototype, we identified areas for improvement (eg, inclusion of a search function).Conclusions: Individuals with spinal cord injury often need to navigate competing interests and priorities, paired with uncertainty about the accuracy and relevance of clinical recommendations. Understanding what matters to individuals with spinal cord injury can help guide the design of behavioral interventions that are useful and acceptable to these individuals in their daily lives. This study shows that involving individuals with spinal cord injury and health care professionals in co-designing a self-management app can foster knowledge cocreation at the intersection of lived experience, medical expertise, and technical solutions.

The aim of this study was to systematically review and synthesize the literature on patients' perceptions of hope in palliative care. PubMed, Scopus, SocINDEX, Cochrane, and Web of Science were screened against the eligibility criteria. After familiarization with the data and conduction of the coding process, studies were thematically analyzed using Braun and Clarke's methodology. The research question guiding our analysis was: what is said about hope from patients in PC? The database searches yielded 24 eligible studies. Three main themes emerged from the studies: Hope beliefs (encompassing patients' understanding of hope and characteristics assigned to it), Hope functions (including the role that hope plays for patients) and Hope work (highlighting aspects that in patients' perspective cultivate hope). This review emphasizes the importance of acknowledging patients' understanding of hope, its role, and the efforts required to sustain it. In particular, it suggests that hope serves as a valuable strategy, fostering meaningful personal relationships towards end of life. In order to address communication challenges in clinical practice, a potential fruitful strategy for nurturing hope could involve engaging family and friends in hope interventions facilitated by healthcare professionals.