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2.
PLoS One ; 17(2): e0260367, 2022.
Article in English | MEDLINE | ID: covidwho-1793557

ABSTRACT

INTRODUCTION: The world is awash with claims about the effects of health interventions. Many of these claims are untrustworthy because the bases are unreliable. Acting on unreliable claims can lead to waste of resources and poor health outcomes. Yet, most people lack the necessary skills to appraise the reliability of health claims. The Informed Health Choices (IHC) project aims to equip young people in Ugandan lower secondary schools with skills to think critically about health claims and to make good health choices by developing and evaluating digital learning resources. To ensure that we create resources that are suitable for use in Uganda's secondary schools and can be scaled up if found effective, we conducted a context analysis. We aimed to better understand opportunities and barriers related to demand for the resources, how the learning content overlaps with existing curriculum and conditions in secondary schools for accessing and using digital resources, in order to inform resource development. METHODS: We used a mixed methods approach and collected both qualitative and quantitative data. We conducted document analyses, key informant interviews, focus group discussions, school visits, and a telephone survey regarding information communication and technology (ICT). We used a nominal group technique to obtain consensus on the appropriate number and length of IHC lessons that should be planned in a school term. We developed and used a framework from the objectives to code the transcripts and generated summaries of query reports in Atlas.ti version 7. FINDINGS: Critical thinking is a key competency in the lower secondary school curriculum. However, the curriculum does not explicitly make provision to teach critical thinking about health, despite a need acknowledged by curriculum developers, teachers and students. Exam oriented teaching and a lack of learning resources are additional important barriers to teaching critical thinking about health. School closures and the subsequent introduction of online learning during the COVID-19 pandemic has accelerated teachers' use of digital equipment and learning resources for teaching. Although the government is committed to improving access to ICT in schools and teachers are open to using ICT, access to digital equipment, unreliable power and internet connections remain important hinderances to use of digital learning resources. CONCLUSIONS: There is a recognized need for learning resources to teach critical thinking about health in Ugandan lower secondary schools. Digital learning resources should be designed to be usable even in schools with limited access and equipment. Teacher training on use of ICT for teaching is needed.


Subject(s)
Health Behavior/physiology , Health Education/methods , Health Knowledge, Attitudes, Practice/ethnology , Adolescent , Choice Behavior/physiology , Curriculum , Digital Technology , Female , Focus Groups , Humans , Information Dissemination/ethics , Information Dissemination/methods , Learning , Male , Reproducibility of Results , Schools/trends , Students , Thinking , Uganda/ethnology
3.
J Med Internet Res ; 23(2): e25120, 2021 02 25.
Article in English | MEDLINE | ID: covidwho-1575528

ABSTRACT

Multisite medical data sharing is critical in modern clinical practice and medical research. The challenge is to conduct data sharing that preserves individual privacy and data utility. The shortcomings of traditional privacy-enhancing technologies mean that institutions rely upon bespoke data sharing contracts. The lengthy process and administration induced by these contracts increases the inefficiency of data sharing and may disincentivize important clinical treatment and medical research. This paper provides a synthesis between 2 novel advanced privacy-enhancing technologies-homomorphic encryption and secure multiparty computation (defined together as multiparty homomorphic encryption). These privacy-enhancing technologies provide a mathematical guarantee of privacy, with multiparty homomorphic encryption providing a performance advantage over separately using homomorphic encryption or secure multiparty computation. We argue multiparty homomorphic encryption fulfills legal requirements for medical data sharing under the European Union's General Data Protection Regulation which has set a global benchmark for data protection. Specifically, the data processed and shared using multiparty homomorphic encryption can be considered anonymized data. We explain how multiparty homomorphic encryption can reduce the reliance upon customized contractual measures between institutions. The proposed approach can accelerate the pace of medical research while offering additional incentives for health care and research institutes to employ common data interoperability standards.


Subject(s)
Computer Security/ethics , Information Dissemination/ethics , Privacy/legislation & jurisprudence , Technology/methods , Humans
4.
Cell ; 184(25): 6010-6014, 2021 12 09.
Article in English | MEDLINE | ID: covidwho-1553721

ABSTRACT

The COVID-19 information epidemic, or "infodemic," demonstrates how unlimited access to information may confuse and influence behaviors during a health emergency. However, the study of infodemics is relatively new, and little is known about their relationship with epidemics management. Here, we discuss unresolved issues and propose research directions to enhance preparedness for future health crises.


Subject(s)
COVID-19/psychology , Infodemic , Information Dissemination/ethics , COVID-19/epidemiology , Epidemics/psychology , Humans , Information Dissemination/methods , Public Health , Research/trends , SARS-CoV-2
7.
Drug Saf ; 43(8): 699-709, 2020 08.
Article in English | MEDLINE | ID: covidwho-1482336

ABSTRACT

The coronavirus disease 2019 (COVID-19) pandemic that hit the world in 2020 triggered a massive dissemination of information (an "infodemic") about the disease that was channeled through the print, broadcast, web, and social media. This infodemic also included sensational and distorted information about drugs that likely first influenced opinion leaders and people particularly active on social media and then other people, thus affecting choices by individual patients everywhere. In particular, information has spread about some drugs approved for other indications (chloroquine, hydroxychloroquine, nonsteroidal anti-inflammatory drugs, angiotensin-converting enzyme inhibitors, angiotensin II receptor antagonists, favipiravir, and umifenovir) that could have led to inappropriate and therefore hazardous use. In this article, we analyze the rationale behind the claims for use of these drugs in COVID-19, the communication about their effects on the disease, the consequences of this communication on people's behavior, and the responses of some influential regulatory authorities in an attempt to minimize the actual or potential risks arising from this behavior. Finally, we discuss the role of pharmacovigilance stakeholders in emergency management and possible strategies to deal with other similar crises in the future.


Subject(s)
Coronavirus Infections , Drug Utilization/trends , Information Dissemination , Pandemics , Pneumonia, Viral , Public Health , Attitude to Health , Betacoronavirus , COVID-19 , Coronavirus Infections/classification , Coronavirus Infections/drug therapy , Coronavirus Infections/epidemiology , Coronavirus Infections/psychology , Humans , Information Dissemination/ethics , Information Dissemination/methods , Medication Therapy Management/ethics , Medication Therapy Management/standards , Pharmacovigilance , Pneumonia, Viral/drug therapy , Pneumonia, Viral/epidemiology , Pneumonia, Viral/psychology , Public Health/methods , Public Health/standards , SARS-CoV-2 , Social Media/ethics , Social Media/standards , Social Medicine/ethics , Social Medicine/standards , COVID-19 Drug Treatment
8.
Yearb Med Inform ; 30(1): 226-232, 2021 Aug.
Article in English | MEDLINE | ID: covidwho-1392945

ABSTRACT

OBJECTIVE: This survey article presents a literature review of relevant publications aiming to explore whether the EU's General Data Protection Regulation (GDPR) has held true during a time of crisis and the implications that arose during the COVID-19 outbreak. METHOD AND RESULTS: Based on the approach taken and the screening of the relevant articles, the results focus on three themes: a critique on GDPR; the ethics surrounding the use of digital health technologies, namely in the form of mobile applications; and the possibility of cross border transfers of said data outside of Europe. Within this context, the article reviews the arising themes, considers the use of data through mobile health applications, and discusses whether data protection may require a revision when balancing societal and personal interests. CONCLUSIONS: In summary, although it is clear that the GDPR has been applied through a mixed and complex experience with data handling during the pandemic, the COVID-19 pandemic has indeed shown that it was a test the GDPR was designed and prepared to undertake. The article suggests that further review and research is needed to first ensure that an understanding of the state of the art in data protection during the pandemic is maintained and second to subsequently explore and carefully create a specific framework for the ethical considerations involved. The paper echoes the literature reviewed and calls for the creation of a unified and harmonised network or database to enable the secure data sharing across borders.


Subject(s)
COVID-19 , Computer Security/legislation & jurisprudence , Data Collection/ethics , Information Dissemination/ethics , Computer Security/ethics , Confidentiality , Data Collection/legislation & jurisprudence , European Union , Government Regulation , Humans , Information Dissemination/legislation & jurisprudence
9.
PLoS One ; 16(7): e0254786, 2021.
Article in English | MEDLINE | ID: covidwho-1325436

ABSTRACT

OBJECTIVES: The objective of this paper is to study under which circumstances wearable and health app users would accept a compensation payment, namely a digital dividend, to share their self-tracked health data. METHODS: We conducted a discrete choice experiment alternative, a separated adaptive dual response. We chose this approach to reduce extreme response behavior, considering the emotionally-charged topic of health data sales, and to measure willingness to accept. Previous experiments in lab settings led to demands for high monetary compensation. After a first online survey and two pre-studies, we validated four attributes for the final online study: monthly bonus payment, stakeholder handling the data (e.g., health insurer, pharmaceutical or medical device companies, universities), type of data, and data sales to third parties. We used a random utility framework to evaluate individual choice preferences. To test the expected prices of the main study for robustness, we assigned respondents randomly to one of two identical questionnaires with varying price ranges. RESULTS: Over a period of three weeks, 842 respondents participated in the main survey, and 272 respondents participated in the second survey. The participants considered transparency about data processing and no further data sales to third parties as very important to the decision to share data with different stakeholders, as well as adequate monetary compensation. Price expectations resulting from the experiment were high; pharmaceutical and medical device companies would have to pay an average digital dividend of 237.30€/month for patient generated health data of all types. We also observed an anchor effect, which means that people formed price expectations during the process and not ex ante. We found a bimodal distribution between relatively low price expectations and relatively high price expectations, which shows that personal data selling is a divisive societal issue. However, the results indicate that a digital dividend could be an accepted economic incentive system to gather large-scale, self-tracked data for research and development purposes. After the COVID-19 crisis, price expectations might change due to public sensitization to the need for big data research on patient generated health data. CONCLUSION: A continuing success of existing data donation models is highly unlikely. The health care sector needs to develop transparency and trust in data processing. An adequate digital dividend could be an effective long-term measure to convince a diverse and large group of people to share high-quality, continuous data for research purposes.


Subject(s)
Health Records, Personal/ethics , Information Dissemination/ethics , Models, Econometric , Wearable Electronic Devices/ethics , COVID-19/economics , COVID-19/psychology , Health Records, Personal/economics , Health Records, Personal/psychology , Humans , Mobile Applications/ethics , Surveys and Questionnaires , Wearable Electronic Devices/economics , Wearable Electronic Devices/psychology
11.
J Gerontol B Psychol Sci Soc Sci ; 76(9): 1904-1912, 2021 10 30.
Article in English | MEDLINE | ID: covidwho-1258772

ABSTRACT

OBJECTIVES: Media sources have consistently described older adults as a medically vulnerable population during the coronavirus disease 2019 (COVID-19) pandemic, yet a lack of concern over their health and safety has resulted in dismissal and devaluation. This unprecedented situation highlights ongoing societal ageism and its manifestations in public discourse. This analysis asks how national news sources performed explicit and implicit ageism during the first month of the pandemic. METHOD: Using content and critical discourse analysis methods, we analyzed 287 articles concerning older adults and COVID-19 published between March 11 and April 10, 2020, in 4 major U.S.-based newspapers. RESULTS: Findings indicate that while ageism was rarely discussed explicitly, ageist bias was evident in implicit reporting patterns (e.g., frequent use of the term "elderly," portrayals of older adults as "vulnerable"). Infection and death rates and institutionalized care were among the most commonly reported topics, providing a limited portrait of aging during the pandemic. The older "survivor" narrative offers a positive alternative by suggesting exceptional examples of resilience and grit. However, the survivor narrative may also implicitly place blame on those unable to survive or thrive in later life. DISCUSSION: This study provides insight for policy makers, researchers, and practitioners exploring societal perceptions of older adults and how these perceptions are disseminated and maintained by the media.


Subject(s)
Ageism , Aging , COVID-19 , Information Dissemination/ethics , Social Media , Social Perception , Aged , Ageism/ethics , Ageism/legislation & jurisprudence , Ageism/prevention & control , Ageism/psychology , Aging/ethics , Aging/physiology , Aging/psychology , COVID-19/epidemiology , COVID-19/psychology , Data Mining/ethics , Data Mining/statistics & numerical data , Geriatrics/trends , Humans , Newspapers as Topic , SARS-CoV-2 , Social Environment , Social Media/ethics , Social Media/trends , Social Perception/ethics , Social Perception/psychology , United States , Vulnerable Populations/psychology
12.
Indian J Med Ethics ; VI(1): 1-3, 2021.
Article in English | MEDLINE | ID: covidwho-1257356

ABSTRACT

Public health emergencies require real-time, accurate information to guide effective and timely responses. This calls for rapid and timely publication of information to promote both its scientific validity and societal value. On the other hand, rapid publication poses a potential threat to the integrity of the information published. Inaccurate or incomplete information arises due to the difficulty in conducting rigorous studies during an ongoing emergency, and the race for the fame and prestige that come with being first. The balance between the potential risks and benefits of rapid publication can be achieved by adhering to the principles of publication ethics that promote the integrity, accuracy and value of scientific literature (1). We highlight ten potential challenges related to scientific publishing and dissemination of information during this pandemic, and the underlying principles of publication ethics that could guide us.


Subject(s)
COVID-19 , Data Accuracy , Guidelines as Topic , Information Dissemination/ethics , Pandemics/ethics , Publishing/ethics , Publishing/standards , Research Report/standards , Adult , Aged , Aged, 80 and over , Female , Humans , Male , Middle Aged , SARS-CoV-2
14.
Hist Philos Life Sci ; 43(2): 68, 2021 May 11.
Article in English | MEDLINE | ID: covidwho-1225081

ABSTRACT

Three interdependent factors are behind the current Covid-19 pandemic distorted narrative: (1) science´s culture of "publish or perish", (2) misinformation spread by traditional media and social digital media and (3) distrust of technology for tracing contacts and its privacy-related issues. In this short paper, I wish to tackle how these three factors have added up to give rise to a negative public understanding of science in times of a health crisis, such as the current Covid-19 pandemic and finally, how to confront all these problems.


Subject(s)
Biological Science Disciplines/standards , COVID-19/psychology , Communication , Digital Technology , Information Dissemination/ethics , Scholarly Communication/standards , Science/standards , Humans , Mass Media , Peer Review, Research , Privacy , Public Opinion , SARS-CoV-2 , Social Media
15.
PLoS One ; 16(5): e0251605, 2021.
Article in English | MEDLINE | ID: covidwho-1225816

ABSTRACT

INTRODUCTION: Rumors and conspiracy theories, can contribute to vaccine hesitancy. Monitoring online data related to COVID-19 vaccine candidates can track vaccine misinformation in real-time and assist in negating its impact. This study aimed to examine COVID-19 vaccine rumors and conspiracy theories circulating on online platforms, understand their context, and then review interventions to manage this misinformation and increase vaccine acceptance. METHOD: In June 2020, a multi-disciplinary team was formed to review and collect online rumors and conspiracy theories between 31 December 2019-30 November 2020. Sources included Google, Google Fact Check, Facebook, YouTube, Twitter, fact-checking agency websites, and television and newspaper websites. Quantitative data were extracted, entered in an Excel spreadsheet, and analyzed descriptively using the statistical package R version 4.0.3. We conducted a content analysis of the qualitative information from news articles, online reports and blogs and compared with findings from quantitative data. Based on the fact-checking agency ratings, information was categorized as true, false, misleading, or exaggerated. RESULTS: We identified 637 COVID-19 vaccine-related items: 91% were rumors and 9% were conspiracy theories from 52 countries. Of the 578 rumors, 36% were related to vaccine development, availability, and access, 20% related to morbidity and mortality, 8% to safety, efficacy, and acceptance, and the rest were other categories. Of the 637 items, 5% (30/) were true, 83% (528/637) were false, 10% (66/637) were misleading, and 2% (13/637) were exaggerated. CONCLUSIONS: Rumors and conspiracy theories may lead to mistrust contributing to vaccine hesitancy. Tracking COVID-19 vaccine misinformation in real-time and engaging with social media to disseminate correct information could help safeguard the public against misinformation.


Subject(s)
COVID-19/psychology , Information Dissemination/methods , Vaccination Refusal/psychology , COVID-19 Vaccines/pharmacology , Communication , Cross-Sectional Studies , Humans , Information Dissemination/ethics , Public Health , SARS-CoV-2/pathogenicity , Social Media , Surveys and Questionnaires , Vaccination/methods
16.
PLoS One ; 16(5): e0251095, 2021.
Article in English | MEDLINE | ID: covidwho-1225809

ABSTRACT

Hesitancy towards the COVID-19 vaccine remains high among the US population. Now that the vaccine is available to priority populations, it is critical to convince those that are hesitant to take the vaccine. Public health communication about the vaccine as well as misinformation on the vaccine occurs through a variety of different information channels. Some channels of information are more commonly found to spread misinformation. Given the expansive information environment, we sought to characterize the use of different media channels for COVID-19 vaccine information and determine the relationship between information channel and vaccine acceptance. We used quota sampling of vaccine priority groups [N = 2,650] between December 13 and 23, 2020 and conducted bivariate chi-squared tests and multivariable multinomial logistic regression analyses to determine the relative impact of channels of information on vaccine acceptance. We found traditional channels of information, especially National TV, National newspapers, and local newspapers increased the likelihood of vaccine acceptance. Individuals who received information from traditional media compared to social media or both traditional and social media were most likely to accept the vaccine. The implications of this study suggest social media channels have a role to play in educating the hesitant to accept the vaccine, while traditional media channels should continue to promote data-driven and informed vaccine content to their viewers.


Subject(s)
COVID-19/psychology , Information Dissemination/methods , Vaccination Refusal/psychology , Adult , COVID-19 Vaccines/pharmacology , Communication , Communications Media/trends , Cross-Sectional Studies , Female , Health Knowledge, Attitudes, Practice , Humans , Information Dissemination/ethics , Male , Patient Acceptance of Health Care/psychology , Public Health , SARS-CoV-2/pathogenicity , Social Media , Surveys and Questionnaires , United States , Vaccination/methods
19.
J Am Med Inform Assoc ; 28(1): 184-189, 2021 01 15.
Article in English | MEDLINE | ID: covidwho-1066359

ABSTRACT

The COVID-19 pandemic response in the United States has exposed significant gaps in information systems and processes that prevent timely clinical and public health decision-making. Specifically, the use of informatics to mitigate the spread of SARS-CoV-2, support COVID-19 care delivery, and accelerate knowledge discovery bring to the forefront issues of privacy, surveillance, limits of state powers, and interoperability between public health and clinical information systems. Using a consensus-building process, we critically analyze informatics-related ethical issues in light of the pandemic across 3 themes: (1) public health reporting and data sharing, (2) contact tracing and tracking, and (3) clinical scoring tools for critical care. We provide context and rationale for ethical considerations and recommendations that are actionable during the pandemic and conclude with recommendations calling for longer-term, broader change (beyond the pandemic) for public health organization and policy reform.


Subject(s)
Bioethical Issues , COVID-19 , Contact Tracing/ethics , Medical Informatics/ethics , Public Health Surveillance , Public Health/ethics , Healthcare Disparities , Humans , Information Dissemination/ethics , Privacy , Public Policy , United States
20.
J Am Med Inform Assoc ; 27(11): 1721-1726, 2020 11 01.
Article in English | MEDLINE | ID: covidwho-1024117

ABSTRACT

Global pandemics call for large and diverse healthcare data to study various risk factors, treatment options, and disease progression patterns. Despite the enormous efforts of many large data consortium initiatives, scientific community still lacks a secure and privacy-preserving infrastructure to support auditable data sharing and facilitate automated and legally compliant federated analysis on an international scale. Existing health informatics systems do not incorporate the latest progress in modern security and federated machine learning algorithms, which are poised to offer solutions. An international group of passionate researchers came together with a joint mission to solve the problem with our finest models and tools. The SCOR Consortium has developed a ready-to-deploy secure infrastructure using world-class privacy and security technologies to reconcile the privacy/utility conflicts. We hope our effort will make a change and accelerate research in future pandemics with broad and diverse samples on an international scale.


Subject(s)
Biomedical Research , Computer Security , Coronavirus Infections , Information Dissemination , Pandemics , Pneumonia, Viral , Privacy , COVID-19 , Humans , Information Dissemination/ethics , Internationality , Machine Learning
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