Virology under the Microscope-a Call for Rational Discourse.

Viruses have brought humanity many challenges: respiratory infection, cancer, neurological impairment and immunosuppression to name a few. Virology research over the last 60+ years has responded to reduce this disease burden with vaccines and antivirals. Despite this long history, the COVID-19 pandemic has brought unprecedented attention to the field of virology. Some of this attention is focused on concern about the safe conduct of research with human pathogens. A small but vocal group of individuals has seized upon these concerns - conflating legitimate questions about safely conducting virus-related research with uncertainties over the origins of SARS-CoV-2. The result has fueled public confusion and, in many instances, ill-informed condemnation of virology. With this article, we seek to promote a return to rational discourse. We explain the use of gain-of-function approaches in science, discuss the possible origins of SARS-CoV-2 and outline current regulatory structures that provide oversight for virological research in the United States. By offering our expertise, we - a broad group of working virologists - seek to aid policy makers in navigating these controversial issues. Balanced, evidence-based discourse is essential to addressing public concern while maintaining and expanding much-needed research in virology.

Leveraging interactive voice response technology to mitigate COVID-19 risk in refugee settlements in Uganda: Lessons learned implementing "Dial-COVID" a toll-free mobile phone symptom surveillance and information dissemination tool.

BACKGROUND: Persons living in refugee settlements in sub-Saharan Africa may be at increased risk for COVID-19 and experience barriers to accessing COVID-19 information. We aimed to evaluate the implementation of "Dial-COVID" a multi-lingual, toll free, telephone platform that uses interactive voice response (IVR) to track COVID-19 symptoms/exposure and disseminate COVID-19 health information in refugee settlements in Uganda. We hypothesized that IVR could provide an alternative way to screen for COVID-19 and communicate public health information to humanitarian populations when physical access and testing capacity were limited. METHODS: The Dial-COVID IVR platform was created in ten languages and advertised by community health workers in refugee settlements for participants to call into toll free. In a recorded IVR symptom survey, participants were screened for COVID-19 symptoms/exposures and based on their responses, received tailored public health messages about COVID-19 risk mitigation in accordance with Uganda Ministry of Health guidelines. Here we report the challenges and lessons learned implementing this research during the pandemic. RESULTS: Between February 2021 and March 2022, 15,465 calls were received by the Dial-COVID platform from all 31 refugee settlements in Uganda through which 6,913 symptom surveys were completed and 10,411 public health messages were disseminated in all study languages. Uptake of Dial-COVID fluctuated with the national COVID-19 caseload and was impacted by phone ownership and connectivity in refugee settlements. Intensified advertising efforts promoted Dial-COVID uptake. Flexibility to adapt IVR messages was contingent on translation capacity. CONCLUSION: Refugees living in refugee settlements across Uganda accessed Dial-COVID to share and obtain COVID-19 information suggesting that IVR holds potential for rapid information dissemination and screening of humanitarian populations during future infectious disease outbreaks and may be a valuable tool for routine public health programs. IVR adaptation flexibility and reach are influenced by language constraints and by contextual factors related to platform access. REGISTRATION DETAILS: World Pandemic Research Network- 490652.

Updated Results of the COVID-19 in MS Global Data Sharing Initiative: Anti-CD20 and Other Risk Factors Associated With COVID-19 Severity.

BACKGROUND AND OBJECTIVES: Certain demographic and clinical characteristics, including the use of some disease-modifying therapies (DMTs), are associated with severe acute respiratory syndrome coronavirus 2 infection severity in people with multiple sclerosis (MS). Comprehensive exploration of these relationships in large international samples is needed. METHODS: Clinician-reported demographic/clinical data from 27 countries were aggregated into a data set of 5,648 patients with suspected/confirmed coronavirus disease 2019 (COVID-19). COVID-19 severity outcomes (hospitalization, admission to intensive care unit [ICU], requiring artificial ventilation, and death) were assessed using multilevel mixed-effects ordered probit and logistic regression, adjusted for age, sex, disability, and MS phenotype. DMTs were individually compared with glatiramer acetate, and anti-CD20 DMTs with pooled other DMTs and with natalizumab. RESULTS: Of 5,648 patients, 922 (16.6%) with suspected and 4,646 (83.4%) with confirmed COVID-19 were included. Male sex, older age, progressive MS, and higher disability were associated with more severe COVID-19. Compared with glatiramer acetate, ocrelizumab and rituximab were associated with higher probabilities of hospitalization (4% [95% CI 1-7] and 7% [95% CI 4-11]), ICU/artificial ventilation (2% [95% CI 0-4] and 4% [95% CI 2-6]), and death (1% [95% CI 0-2] and 2% [95% CI 1-4]) (predicted marginal effects). Untreated patients had 5% (95% CI 2-8), 3% (95% CI 1-5), and 1% (95% CI 0-3) higher probabilities of the 3 respective levels of COVID-19 severity than glatiramer acetate. Compared with pooled other DMTs and with natalizumab, the associations of ocrelizumab and rituximab with COVID-19 severity were also more pronounced. All associations persisted/enhanced on restriction to confirmed COVID-19. DISCUSSION: Analyzing the largest international real-world data set of people with MS with suspected/confirmed COVID-19 confirms that the use of anti-CD20 medication (both ocrelizumab and rituximab), as well as male sex, older age, progressive MS, and higher disability are associated with more severe course of COVID-19.

Bitbox: A Cloud-based data sharing solution for medical images.

With the modernization and digitisation of the healthcare system, the need for exchanging medical data has become increasingly compelling. Biomedical imaging has been no exception, where the gathering of medical imaging acquisitions from multi-site collaborations have enabled to reach data sizes never imaginable until few years ago. Usually, medical imaging data have very large volume and diverse complexity, requiring bespoken transfer systems that protect personal information as well as data integrity. Despite many digital innovations, there are still technical and regulatory bottlenecks that make biomedical imaging data exchange challenging. Here we present Bitbox, a web-based application which provides a reliable yet straightforward service to securely exchange medical imaging data. With Bitbox, both imaging and non-imaging data of any type can be transferred from any external and independent site into a centralized server. A showcase of the system will be illustrated for the COVID-19 Clinical Neuroscience Study (COVID-CNS) project, a UK-wide experimental medicine study to investigate the neurological and neuropsychiatric effects of COVID-19 infections in hundreds of patients.

Medical Image Sharing in Japan.

This paper reports the history, background including politics, current status of Japan's health imaging study and other information sharing. Its realization was slow until the Ministry of Health, Labour and Welfare (MHLW) started paying digital image storage at the same rate as films in 2008. Information sharing was initiated in early 2010s, which was before vendors became ready for Integrating the Healthcare Enterprise (IHE) cross-enterprise document sharing (XDS), with the result that most of 34 large regional sharing systems are in non-standardized protocol. One standardized example is the Hamamatsu area where inexpensive online PDI (portable data for imaging) was introduced.

Quality of Internet Videos Related to Pediatric Urology in Mainland China: A Cross-Sectional Study.

Background: Pediatric urological diseases pose serious threats to children's physical and mental health. The COVID-19 pandemic has resulted in poor pediatric outcomes for cryptorchidism, hypospadias, and testicular torsion. Presently, many people tend to seek health information via social media platforms. This study aims to quantitatively assess the quality of videos as an information source for pediatric urology in mainland China. Methods: In this cross-sectional study, a search was performed on social media platforms (Tiktok, Bilibili, and Weibo) with the search terms "cryptorchidism", "hypospadias", and "testicular torsion". The first 30 results with any search term listed by relevance were selected in each platform. Video features (duration, number of likes, comments, and shares) and video sources were collected. Each video included in the study was assessed using DISCERN, Journal of the American Medical Association (JAMA) Benchmark Criteria, and Hexagonal Radar Schema. A correlation analysis was performed considering video features, video source, DISCERN scores and JAMA scores. Results: A total of 152 videos were included and analyzed. The majority of videos were from physicians (65.8%). According to the DISCERN classification, most videos were rated as "very poor" (48.0%) and "poor" (36.8%). The mean DISCERN and JAMA scores were 36.56 and 2.68, respectively. The duration of videos uploaded by physicians was the shortest (P < 0.001). The video source had no relevance to numbers of "likes", "comments", "shares", DISCERN scores, and JAMA scores (all P-values > 0.05). Other than video duration (P < 0.001), there was no statistically significant difference between groups for any of the recorded or calculated video data (all P values > 0.05). Hexagonal Radar Charts showed the severe imbalance and deficiency of video information. In general, Tiktok videos with the shortest duration received the most numbers of "likes", "comments", and "shares", whereas the overall quality of videos on Weibo was relatively high. Conclusions: Despite most of the videos on social media platforms being uploaded by medical authors, the overall quality was poor. The misleading, inaccurate and incomplete information may pose a health risk to the viewers, especially during the COVID-19 pandemic. Much effort needs to be undertaken to improve the quality of health-related videos regarding pediatric urology.

Assessment of the educational value of endodontic access cavity preparation YouTube video as a learning resource for students.

OBJECTIVE: To evaluate the educational value of YouTube as a learning tool for dental students regarding endodontic access cavity preparation. METHODS AND FINDINGS: YouTube search was made for videos related to endodontic access cavity preparation using specific terms. After exclusions, 41 videos were chosen and assessed for tooth type, video length, days since upload, country of origin, number of views and likes, source of authorship, and viewing rate. To grade the content of videos, a usefulness score with seven elements was developed. Each element was given a score of 0 or 1. Statistical tests were run by using Kruskal-Wallis and Mann-Whitney tests (SPSS Inc, Chicago, IL, USA) at a 5% significance level. The videos received a mean of 181198.5 views with a mean duration of 686.1 seconds. The mean number of "likes" was 1047.8. Almost half of the videos covered content related to molar teeth. Most videos were provided by health care professionals with almost 50% uploaded from India. The mean usefulness score was 4.29 (range: 1-7) and the most discussed elements were description, instruments used, access cavity demonstration, and evaluation criteria. About a quarter of the videos were classified as good, while 46.3% as moderate and 29.3% as poor. Among the content usefulness categories, no difference was found in the video demographics (p>0.05) except "days since upload" (p = 0.018) in which good quality videos were found to have the highest median. Moreover, although insignificant, good videos were found to have the longest duration and lowest number of views, likes, and viewing rate. The mean usefulness score of videos released during the COVID-19 pandemic was lower than that for pre-pandemic videos (p = 0.042), and videos uploaded by academic institutions had a higher mean usefulness score than videos uploaded by health care professionals (p<0.001). CONCLUSIONS: Information on endodontic access cavity preparation is not comprehensive in most of the reviewed YouTube videos and could be of low educational value.

Measuring re-identification risk using a synthetic estimator to enable data sharing.

BACKGROUND: One common way to share health data for secondary analysis while meeting increasingly strict privacy regulations is to de-identify it. To demonstrate that the risk of re-identification is acceptably low, re-identification risk metrics are used. There is a dearth of good risk estimators modeling the attack scenario where an adversary selects a record from the microdata sample and attempts to match it with individuals in the population. OBJECTIVES: Develop an accurate risk estimator for the sample-to-population attack. METHODS: A type of estimator based on creating a synthetic variant of a population dataset was developed to estimate the re-identification risk for an adversary performing a sample-to-population attack. The accuracy of the estimator was evaluated through a simulation on four different datasets in terms of estimation error. Two estimators were considered, a Gaussian copula and a d-vine copula. They were compared against three other estimators proposed in the literature. RESULTS: Taking the average of the two copula estimates consistently had a median error below 0.05 across all sampling fractions and true risk values. This was significantly more accurate than existing methods. A sensitivity analysis of the estimator accuracy based on variation in input parameter accuracy provides further application guidance. The estimator was then used to assess re-identification risk and de-identify a large Ontario COVID-19 behavioral survey dataset. CONCLUSIONS: The average of two copula estimators consistently provides the most accurate re-identification risk estimate and can serve as a good basis for managing privacy risks when data are de-identified and shared.

Quality Assessment of YouTube Videos as an Information Source for Testicular Torsion.

Background: Testicular torsion is an acute scrotal disease requiring urgent management, and the COVID-19 pandemic has been demonstrated to lead to poor outcomes for this disease. Presently, many people tend to seek health information via YouTube. This study aims to quantitatively assess the quality of English YouTube video content as an information source of testicular torsion. Methods: In this cross-sectional study, a search was performed with the search term "testicular torsion" on YouTube, and the first 100 videos listed by relevance were selected for our analysis. Duplicate, non-English, videos without audio and surgical videos were excluded. Video features (duration, number of days online, views, likes, comments), source of the video, and author's country were collected. Each video included in the study was assessed using DISCERN and Journal of the American Medical Association (JAMA) Benchmark Criteria. A correlation analysis was performed considering video features, video source, DISCERN scores and JAMA scores. Results: A total of 66 videos were included and analyzed. The most common video content was general information, including etiology, symptoms, and treatment. The majority of videos were from education and training websites (30%), physicians (23%), and independent users (21%). The mean DISCERN and JAMA scores were 36.56 and 2.68, respectively. According to DISCERN, the quality of video uploaded by physicians was relatively high (P < 0.001), and the quality of video uploaded by independent users was relatively low (P < 0.001). The JAMA score had no relevance to the video source (P = 0.813). The correlation between the video features, DISCERN and JAMA scores was controversial by different assessment methods. Conclusions: Despite most of the videos on YouTube being uploaded by medical or education-related authors, the overall quality was poor. The misleading, inaccurate and incomplete information may pose a health risk to the viewers, especially during the COVID-19 pandemic. Much effort needs to be undertaken to improve the quality of health-related videos regarding testicular torsion.

Information sharing practices during the COVID-19 pandemic: A case study about face masks.

This article contributes an empirical analysis of information sharing practices on Twitter relating to the use of face masks in the context of COVID-19. Behavioural changes, such as the use of face masks, are often influenced by people's knowledge and perceptions, which in turn can be affected by the information available to them. Face masks were not recommended for use by the UK public at the beginning of the COVID-19 pandemic. Due to developments in scientific understanding, the guidance changed and by the end of 2020 they were mandatory on public transport and in shops. This research examines tweets in this longitudinal context and, therefore, provides novel insights into the dynamics of crisis communication in an ongoing crisis event with emerging scientific evidence. Specifically, analysis of the content of tweets, external resources most frequently shared, and users sharing information are considered. The conclusions contribute to developing understanding of the digital information ecology and provide practical insights for crisis communicators. Firstly, the analysis shows changes in the frequency of tweets about the topic correspond with key guidance and policy changes. These are, therefore, points in time official channels of information need to utilise the public's information seeking and sharing practices. Secondly, due to changes in face mask guidance and policy, the current literature on digital information ecology is insufficient for capturing the dynamic nature of a long-term ongoing crisis event. Challenges can arise due to the prolonged circulation of out-of-date information, i.e. not strategic misinformation, nor "mis"-information at all, which can have serious ramifications for crisis communication practitioners. Thirdly, the role of traditional media and other journalism/broadcasting platforms in shaping conversations is evident, as is the potential for scientific organisations' and individual people's Twitter user accounts. This plurality of contributors needs to be acknowledged and understood to inform crisis communication strategies.

Australian general practitioner perceptions to sharing clinical data for secondary use: a mixed method approach.

OBJECTIVE: The potential for data collected in general practice to be linked and used to address health system challenges of maintaining quality care, accessibility and safety, including pandemic support, has led to an increased interest in public acceptability of data sharing, however practitioners have rarely been asked to share their opinions on the topic. This paper attempts to gain an understanding of general practitioner's perceptions on sharing routinely collected data for the purposes of healthcare planning and research. It also compares findings with data sharing perceptions in an international context.  MATERIALS AND METHODS: A mixed methods approach combining an initial online survey followed by face-to-face interviews (before and during COVID-19), designed to identify the barriers and facilitators to sharing data, were conducted on a cross sectional convenience sample of general practitioners across Western Australia (WA). RESULTS: Eighty online surveys and ten face-to-face interviews with general practitioners were conducted from November 2020 - May 2021. Although respondents overwhelmingly identified the importance of population health research, their willingness to participate in data sharing programs was determined by a perception of trust associated with the organisation collecting and analysing shared data; a clearly defined purpose and process of collected data; including a governance structure providing confidence in the data sharing initiative simultaneously enabling a process of data sovereignty and autonomy. DISCUSSION: Results indicate strong agreement around the importance of sharing patient's medical data for population and health research and planning. Concerns pertaining to lack of trust, governance and secondary use of data continue to be a setback to data sharing with implications for primary care business models being raised. CONCLUSION: To further increase general practitioner's confidence in sharing their clinical data, efforts should be directed towards implementing a robust data governance structure with an emphasis on transparency and representative stakeholder inclusion as well as identifying the role of government and government funded organisations, as well as building trust with the entities collecting and analysing the data.

How Vaccination Rumours Spread Online: Tracing the Dissemination of Information Regarding Adverse Events of COVID-19 Vaccines.

Objectives: To trace the emergence and dissemination of the most prominent rumours about potential adverse effects of COVID-19 vaccines. Methods: We use a weekly Google Trends search to gather information about what alleged adverse events are being associated with COVID vaccines by the general population. We then use CrowdTangle and Factiva searches to examine how discussions about the five most prominent adverse events have spread through traditional media channels and Facebook. Results: Traditional mass media reporting remains crucial in both promoting and moderating discussions around alleged adverse events. While some cases illustrate that social media networks can synthesise and amplify rumours about adverse events, traditional media coverage remains crucial as a forum for exploring and debunking spurious claims. Conclusion: Traditional media stories still bear signficant responsibility as credibility markers for rumours about vaccine adverse events. Journalists should therefore be encouraged to be particularly earnest when reporting such stories, and the scientific community should aid journalists in this task by clearly responding to any rumours emerging online.

Ethical implications of online healthcare data sharing in the Indian context.

Technology is not only changing the way doctors and patients communicate, but also how physicians interact with other healthcare providers. This interaction has increasingly begun to be over online media such as telemedicine networks/instant messaging apps/social media/emails. The Covid-19 pandemic has further spurred the rapid adoption of these digital healthcare technologies, amplifying the potential risks for data breach of sensitive personal information.

Public attitudes towards sharing loyalty card data for academic health research: a qualitative study.

BACKGROUND: A growing number of studies show the potential of loyalty card data for use in health research. However, research into public perceptions of using this data is limited. This study aimed to investigate public attitudes towards donating loyalty card data for academic health research, and the safeguards the public would want to see implemented. The way in which participant attitudes varied according to whether loyalty card data would be used for either cancer or COVID-19 research was also examined. METHODS: Participants (N = 40) were recruited via Prolific Academic to take part in semi-structured telephone interviews, with questions focused on data sharing related to either COVID-19 or ovarian/bowel cancer as the proposed health condition to be researched. Content analysis was used to identify sub-themes corresponding to the two a priori themes, attitudes and safeguards. RESULTS: Participant attitudes were found to fall into two categories, either rational or emotional. Under rational, most participants were in favour of sharing loyalty card data. Support of health research was seen as an important reason to donate such data, with loyalty card logs being considered as already within the public domain. With increased understanding of research purpose, participants expressed higher willingness to donate data. Within the emotional category, participants shared fears about revealing location information and of third parties obtaining their data. With regards to safeguards, participants described the importance of anonymisation and the level of data detail; the control, convenience and choice they desired in sharing data; and the need for transparency and data security. The change in hypothetical purpose of the data sharing, from Covid-19 to cancer research, had no impact on participants' decision to donate, although did affect their understanding of how loyalty card data could be used. CONCLUSIONS: Based on interviews with the public, this study contributes recommendations for those researchers and the wider policy community seeking to obtain loyalty card data for health research. Whilst participants were largely in favour of donating loyalty card data for academic health research, information, choice and appropriate safeguards are all exposed as prerequisites upon which decisions are made.

The COVID-19 Data Exchange Platform of the German University Medicine.

COVID-19 has challenged the healthcare systems worldwide. To quickly identify successful diagnostic and therapeutic approaches large data sharing approaches are inevitable. Though organizational clinical data are abundant, many of them are available only in isolated silos and largely inaccessible to external researchers. To overcome and tackle this challenge the university medicine network (comprising all 36 German university hospitals) has been founded in April 2020 to coordinate COVID-19 action plans, diagnostic and therapeutic strategies and collaborative research activities. 13 projects were initiated from which the CODEX project, aiming at the development of a Germany-wide Covid-19 Data Exchange Platform, is presented in this publication. We illustrate the conceptual design, the stepwise development and deployment, first results and the current status.

AP-HP Health Data Space (AHDS) to the Test of the Covid-19 Pandemic.

Sharing observational and interventional health data within a common data space enables university hospitals to leverage such data for biomedical discovery and moving towards a learning health system. OBJECTIVE: To describe the AP-HP Health Data Space (AHDS) and the IT services supporting piloting, research, innovation and patient care. METHODS: Built on three pillars - governance and ethics, technology and valorization - the AHDS and its major component, the Clinical Data Warehouse (CDW) have been developed since 2015. RESULTS: The AP-HP CDW has been made available at scale to AP-HP both healthcare professionals and public or private partners in January 2017. Supported by an institutional secured and high-performance cloud and an ecosystem of tools, mostly open source, the AHDS integrates a large amount of massive healthcare data collected during care and research activities. As of December 2021, the AHDS operates the electronic data capture for almost +840 clinical trials sponsored by AP-HP, the CDW is enabling the processing of health data from more than 11 million patients and generated +200 secondary data marts from IRB authorized research projects. During the Covid-19 pandemic, AHDS has had to evolve quickly to support administrative professionals and caregivers heavily involved in the reorganization of both patient care and biomedical research. CONCLUSION: The AP-HP Data Space is a key facilitator for data-driven evidence generation and making the health system more efficient and personalized.

Paradigm shift: Beyond the COVID-19 era, is YouTube the future of education for CABG patients?

INTRODUCTION: Patients commonly use YouTube for education, and this may have increased due to COVID-19 related restrictions on access to healthcare professionals. However, YouTube videos lack peer review and regulation. To assess patient education in the COVID-19 era, we analyzed the quality of YouTube videos on coronary artery bypass graft (CABG) surgery. METHODS: We searched YouTube using the phrase "coronary artery bypass graft." Two authors individually used the Journal of the American Medical Association (JAMA), DISCERN, and Health on the Net (HON) systems, to rate the first 50 videos retrieved. Data collected for each video included; number of views, duration since upload, percentage positivity (proportion of likes relative to total likes plus dislikes), number of comments, and video author. Interobserver reliability was assessed using an intraclass correlation coefficient (ICC). Associations between video characteristics and quality were tested using linear regression or t-tests. RESULTS: The average number of views was 575,571. Average quality was poor, with mean scores of 1.93/4 (ICC 0.54) for JAMA criteria, 2.52/5 (ICC 0.78) for DISCERN criteria, and 4.04/8 (ICC 0.66) for HON criteria. Videos uploaded by surgeons scored highest overall (p < .05). No other factors demonstrated significant association with video quality. CONCLUSION: YouTube videos on CABG surgery are of poor quality and may be inadequate for patient education. Given the complexity of the procedure and that beyond the COVID-19 era, patients are more likely to seek education from digital sources, treating surgeons should advise of YouTube's limitations and direct patients to reliable sources of information.

Regulatory Frameworks for Clinical Trial Data Sharing: Scoping Review.

BACKGROUND: Although well recognized for its scientific value, data sharing from clinical trials remains limited. Steps toward harmonization and standardization are increasing in various pockets of the global scientific community. This issue has gained salience during the COVID-19 pandemic. Even for agencies willing to share data, data exclusivity practices complicate matters; strict regulations by funders affect this even further. Finally, many low- and middle-income countries (LMICs) have weaker institutional mechanisms. This complex of factors hampers research and rapid response during public health emergencies. This drew our attention to the need for a review of the regulatory landscape governing clinical trial data sharing. OBJECTIVE: This review seeks to identify regulatory frameworks and policies that govern clinical trial data sharing and explore key elements of data-sharing mechanisms as outlined in existing regulatory documents. Following from, and based on, this empirical analysis of gaps in existing policy frameworks, we aimed to suggest focal areas for policy interventions on a systematic basis to facilitate clinical trial data sharing. METHODS: We followed the JBI scoping review approach. Our review covered electronic databases and relevant gray literature through a targeted web search. We included records (all publication types, except for conference abstracts) available in English that describe clinical trial data-sharing policies, guidelines, or standard operating procedures. Data extraction was performed independently by 2 authors, and findings were summarized using a narrative synthesis approach. RESULTS: We identified 4 articles and 13 policy documents; none originated from LMICs. Most (11/17, 65%) of the clinical trial agencies mandated a data-sharing agreement; 47% (8/17) of these policies required informed consent by trial participants; and 71% (12/17) outlined requirements for a data-sharing proposal review committee. Data-sharing policies have, a priori, milestone-based timelines when clinical trial data can be shared. We classify clinical trial agencies as following either controlled- or open-access data-sharing models. Incentives to promote data sharing and distinctions between mandated requirements and supportive requirements for informed consent during the data-sharing process remain gray areas, needing explication. To augment participant privacy and confidentiality, a neutral institutional mechanism to oversee dissemination of information from the appropriate data sets and more policy interventions led by LMICs to facilitate data sharing are strongly recommended. CONCLUSIONS: Our review outlines the immediate need for developing a pragmatic data-sharing mechanism that aims to improve research and innovations as well as facilitate cross-border collaborations. Although a one-policy-fits-all approach would not account for regional and subnational legislation, we suggest that a focus on key elements of data-sharing mechanisms can be used to inform the development of flexible yet comprehensive data-sharing policies so that institutional mechanisms rather than disparate efforts guide data generation, which is the foundation of all scientific endeavor.