A data science roadmap for open science organizations engaged in early-stage drug discovery.

The Structural Genomics Consortium is an international open science research organization with a focus on accelerating early-stage drug discovery, namely hit discovery and optimization. We, as many others, believe that artificial intelligence (AI) is poised to be a main accelerator in the field. The question is then how to best benefit from recent advances in AI and how to generate, format and disseminate data to enable future breakthroughs in AI-guided drug discovery. We present here the recommendations of a working group composed of experts from both the public and private sectors. Robust data management requires precise ontologies and standardized vocabulary while a centralized database architecture across laboratories facilitates data integration into high-value datasets. Lab automation and opening electronic lab notebooks to data mining push the boundaries of data sharing and data modeling. Important considerations for building robust machine-learning models include transparent and reproducible data processing, choosing the most relevant data representation, defining the right training and test sets, and estimating prediction uncertainty. Beyond data-sharing, cloud-based computing can be harnessed to build and disseminate machine-learning models. Important vectors of acceleration for hit and chemical probe discovery will be (1) the real-time integration of experimental data generation and modeling workflows within design-make-test-analyze (DMTA) cycles openly, and at scale and (2) the adoption of a mindset where data scientists and experimentalists work as a unified team, and where data science is incorporated into the experimental design.

Knowledge sharing in virtual communities of practice of family caregivers of people with Alzheimer's.

INTRODUCTION: Knowledge sharing can only happen in the context of a trusting and supportive environment, such as evolves in communities of practice and their virtual equivalent, virtual communities of practice. The main objective of this study was to understand knowledge sharing between participants in a virtual community of practice of caregivers of people with Alzheimer's. METHODS: The authors designed their own mobile application, and two virtual communities of practice were created independently and differentiated by how they were moderated: one by an expert caregiver and the other by three health professionals. 38 caregivers and four moderators were involved in the study, which ran between July 2017 and April 2018. A total of 1925 messages were exchanged within the two communities and used as data in the study. Message data was analysed using LINKS (Leveraging Internet Networks for knowledge sharing). RESULTS: Participants were more motivated to acquire knowledge related to caring for the person with Alzheimer's rather than caring for themselves. The purpose of the messages was to inform others about the sender and not to seek answers. It seems that the interaction was more to socialise and to feel heard, than to gain information. Face to face meetings appear to have accelerated community development. On nearly every parameter, behaviour was significantly different in the two communities, reflecting the importance of the character of the moderator. Caring for oneself was a much stronger theme in the community that included health professionals. Experiential knowledge sharing was particularly strong in the group led by a caregiver. DISCUSSION: Caregivers adapted the virtual community of practice to their own needs and mainly shared social knowledge. This focus on social support, which seems to be more valued by the caregivers than information about the disease, was not an expected pattern. Virtual communities of practice where peers count on each other, function more as a support group, whereas those moderated by health professionals function more as a place to go to acquire information. The level of interactivity points to such communities being important for knowledge sharing not mere knowledge transfer.

COVID-19 health information system assessments in eight European countries: identified gaps, best practices and recommendations.

BACKGROUND: Global threats, such as the coronavirus disease 2019 (COVID-19) pandemic, have highlighted the critical importance of robust and well-functioning health information systems (HIS) in effectively addressing public health emergencies. To enhance the understanding and the functioning of such systems, it is crucial to perform HIS assessments. This article explores key gaps and identifies best practices in the COVID-19 HIS of eight European countries. Furthermore, it provides recommendations to strengthen European systems for better pandemic preparedness. METHODS: Assessments were carried out in eight European countries using an adapted version of the WHO support tool to strengthen HIS and the Joint Action on Health Information assessment tool. The assessments took place between January 2022 and April 2023. RESULTS: Four main themes emerged regarding the gaps and best practices identified in the various HIS: organizational, technical, legal and resources. The results of these assessments show different approaches implemented by countries to improve their HIS and respond to the demands of the pandemic. CONCLUSIONS: It is imperative for countries to draw valuable insights from the COVID-19 pandemic and strengthen their HIS. This involves the adaptation or development of pandemic preparedness plans, strengthening legislative framework for data sharing and privacy protection, promotion of data standards and international definitions and implementation of a unique person identifier. Additionally, countries will have to act in this post-pandemic era and integrate the newly developed systems and innovations into existing structures, maintain and develop trust by citizens through transparent communication and engage in infodemic management and address resource gaps in the workforce.

European Health Information Portal: a one-stop shop for health information.

BACKGROUND: Timely and high-quality population-level health information is needed to support evidence-informed decision-making, for planning and evaluation of prevention, care and cure activities as well as for research to generate new knowledge. FAIR (Findable, Accessible, Interoperable and Reusable) principles are one of the key elements supporting health research and making it more cost-effective through the reuse of already existing data. Currently, health data are in many countries dispersed and difficult to find and access. METHODS: Two EU Public Health Programmes co-funded Joint Actions, Information for Action (InfAct) and Population Health Information Research Infrastructure (PHIRI) have established a European Health Information Portal, a web-based service, to facilitate better findability, access, interoperability and reuse of existing health information. RESULTS: The European Health Information Portal (www.healthinformationportal.eu) has been established including sections on National Nodes, data sources, publications, health information projects within countries and across Europe, research networks and research infrastructures, ethical and legal issues for health information exchange and use, capacity-building activities in all areas of population health and a dedicated COVID-19 section. CONCLUSIONS: The European Health Information Portal, being a central place for a wide range of population health information from EU Member States, is an information source for researchers, policy-makers and other relevant stakeholders. It is important to ensure the sustainability of the portal, especially in light of the European Health Data Space (EHDS) Regulation proposal and its requirements regarding the secondary use of health data.

How to help countries improve resilience during a pandemic: an example of a Rapid Exchange Forum.

BACKGROUND: The COVID-19 pandemic demanded quick exchanges between experts and institutions supporting governments to provide evidence-based information in response to the crisis. Initially, there was no regular cross-country forum in the field of population health. This paper describes the set-up and benefits of implementing such a forum. METHODS: A group of public health practitioners from academia, national public health institutes and ministries of health decided in April 2020 to meet bi-monthly to discuss a vast array of population health topics in a structured format called a Rapid Exchange Forum (REF). An ad-hoc mailing group was established to collect responses to questions brought forward in the forum from at least five countries within 24 h. This endeavour, which evolved as network of networks was awarded an EU grant in autumn 2020 and was called PHIRI (Population Health Information Research Infrastructure). RESULTS: Responses from up to 31 countries were compiled and shared immediately via the European Health Information Portal. This exchange was complemented by special REFs that focused on the advantages and disadvantages of vaccination, for example. By July 2023, 54 REFs had taken place with topics going beyond COVID-19. CONCLUSION: The REF demonstrated its value for quick yet evidence-based cross-country exchange in times of crisis and was highly appreciated by countries and European Commission. It demonstrated its sustainability even after the acute crisis by expanding the topics covered and managing to continue exchange with the aim of capacity building and mutual learning, making it a true EU response and coordination mechanism.

Exploring stroke discourse on Twitter through content and network analysis among Indian users.

The study aimed to understand stroke-related Twitter conversations in India, focusing on topics, message sources, reach, and influential users to provide insights to stakeholders regarding community needs for knowledge, support, and interventions. Geo-tagged Twitter posts focusing on stroke originating from India and, spanning from November 7, 2022, to February 28, 2023, were systematically obtained via the Twitter application programming interface, using keywords and hashtags sourced through Symplur Signals. Preprocessing involved the removal of hashtags, stop words, and URLs. The Latent Dirichlet Allocation (LDA) topic model was used to identify recurring stroke-related topics, while influential users were identified through social network analysis. About half of the tweets about stroke in India were about seeking support and post-stroke bereavement sharing and had the highest reachability. Four out of 10 tweets were from the individual twitter users. Tweets on the topic risk factors, awareness and prevention (14.6%) constituted the least proportion, whereas the topic management, research, and promotion had the least retweet ratio. Twitter demonstrates significant potential as a platform for both disseminating and acquiring stroke-related information within the Indian context. The identified topics and understanding of the content of discussion offer valuable resources to public health professionals and organizations to develop targeted educational and engagement strategies for the relevant audience.

[Solidarity : new paradigm for health data spaces?] / Solidarité : nouveau paradigme pour les espaces des données de santé ?

At the intersection of health promotion and health data sharing, a normative paradigm is emerging: solidarity. This principle became evident with the European Commission's proposal for the European Health Data Space in 2022, approved by the European Parliament in 2024, and Switzerland's DigiSanté project. This article examines health data spaces beyond traditional legal considerations, exploring the implications of increased reliance on solidarity. Highlighting public and private actors, it analyzes the use of health data for research, health surveillance, and profit. The article emphasizes the need for robust frameworks to balance data use for the common good and mitigate the risks of repression and exploitation.

À l'intersection entre promotion de la santé et partage de données de santé, un paradigme normatif émerge : celui de la solidarité. Ce principe s'est révélé avec la proposition de la Commission européenne pour l'espace européen des données de santé en 2022, approuvée par le Parlement européen en 2024, et le projet DigiSanté en Suisse. Cet article examine les espaces des données de santé au-delà des considérations juridiques traditionnelles, en explorant les implications d'un recours accru à la solidarité. En mettant en lumière les acteurs publics et privés, il analyse l'utilisation des données de santé à des fins de recherche, de surveillance sanitaire et de profit. L'article souligne la nécessité de cadres robustes pour équilibrer l'utilisation des données pour le bien commun et atténuer les risques de répression et d'exploitation.

Outcomes of co-designed communities of practice that support members to address public health issues.

Communities of practice are commonly used to support members in responding to public health issues. This study evaluated the outcomes of five co-designed communities of practice to determine if members' expectations were met, if knowledge sharing between members extended to knowledge translation, and if that supported members in addressing public health issues. Data were collected through an initial needs assessment, observations were made during community of practice sessions over 1 year, and qualitative interviews were conducted at the end of that year. The findings provided evidence that members' expectations were met, knowledge sharing took place within the communities of practice, and personal benefits gained supported members in advancing knowledge sharing with other members to knowledge translation outside their community of practice. Results demonstrate three outcomes of knowledge translation for members: disseminating knowledge to others, applying knowledge to make small-scale changes in practice and leveraging the knowledge to expand its reach beyond members' organizations. While the scale and speed of expanding outcomes were below initial expectations as indicated in the initial needs assessments, members remained optimistic about achieving larger-scale impacts in the future. This study showed that communities of practice achieve gradual progress rather than quick wins. Co-design supports the facilitators in meeting members' needs, which can positively contribute to members sharing knowledge and translating that knowledge to support their practice to address public health issues.

Utilizing social media for community risk communication in megacities: analysing the impact of WeChat group information interaction and perception on communication satisfaction during the COVID-19 pandemic in Shanghai.

BACKGROUND: Against the backdrop of the global public health crisis, the COVID-19 pandemic has exposed significant disparities in the supply and demand of risk information related to public health crises, posing severe challenges to risk governance in megacities. Shanghai, China, introduced community WeChat groups for community communication, effectively facilitating the dissemination and response of grassroots information and providing a new path for interactive governance in the community. METHODS: This study collected 1006 questionnaires from residents of 350 communities in Shanghai through an online survey between June 10 and July 10, 2022. Multiple linear regression analysis was conducted to examine the impact of different participants (including the community, core residents, and the combined community and core residents) on community risk communication, perceived communication quality, and dissemination themes related to COVID-19 on community communication satisfaction. Additionally, in-depth interviews were conducted with 20 core residents from different types of communities, focusing on the specific methods of risk communication through community WeChat groups and their ability to disseminate information, respond to, and solve problems. RESULTS: Perceived information coverage and perceived response efficiency are significantly positively correlated with communication satisfaction. Notably, the speed of community information response has the greatest impact on communication satisfaction. Regarding COVID-19-related information dissemination themes, "community outbreaks, supplies, nucleic acids, outbreak prevention measures, and scientific content" all have a significant impact on communication effectiveness, with "nucleic acid testing information" having the greatest impact. Although the statistical data indicate that the participation of core residents in risk communication does not significantly affect communication satisfaction, it seems to be related to the size of the community, and the interview results further validate this conclusion. CONCLUSION: In the future, grassroots communities should consider the affordances of social media, recognize the significant correlation between risk communication and grassroots trust, and formulate more detailed and targeted risk communication strategies. In particular, incorporating core residents into "semiformal" grassroots organizations can improve community service quality, thereby enhancing community resilience in the face of public health emergencies.

Sharing massive biomedical data at magnitudes lower bandwidth using implicit neural function.

Efficient storage and sharing of massive biomedical data would open up their wide accessibility to different institutions and disciplines. However, compressors tailored for natural photos/videos are rapidly limited for biomedical data, while emerging deep learning-based methods demand huge training data and are difficult to generalize. Here, we propose to conduct Biomedical data compRession with Implicit nEural Function (BRIEF) by representing the target data with compact neural networks, which are data specific and thus have no generalization issues. Benefiting from the strong representation capability of implicit neural function, BRIEF achieves 2[Formula: see text]3 orders of magnitude compression on diverse biomedical data at significantly higher fidelity than existing techniques. Besides, BRIEF is of consistent performance across the whole data volume, and supports customized spatially varying fidelity. BRIEF's multifold advantageous features also serve reliable downstream tasks at low bandwidth. Our approach will facilitate low-bandwidth data sharing and promote collaboration and progress in the biomedical field.

European survey: citizens' attitudes on personalized medicine, genetic testing and health data sharing - design and delivery.

In the transformative landscape of healthcare, personalized medicine emerges as a pivotal shift, harnessing genetic, environmental and lifestyle data to tailor medical treatments for enhanced outcomes and cost efficiency. Central to its success is public engagement and consent to share health data amidst rising data privacy concerns. To investigate European public opinion on this paradigm, we executed a comprehensive cross-sectional survey to capture the general public's views on personalized medicine and data-sharing modalities, including digital tools and electronic records. The survey was distributed in eight major European Union countries and the results aim at guiding future policymaking and trust-building measures for secure health data exchange. This article delineates our methodological approach, whereby survey findings will be expounded in subsequent publications.

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#BeSeen: understanding young people's views of the motivation and impacts of sharing self-harm imagery online and use of their social media data for research-a UK participatory arts-led qualitative study.

OBJECTIVES: This study explored the views of young people from diverse backgrounds, with or without a history of self-harm, on the motivation and impacts of sharing self-harm imagery online and the use of their social media data for mental health research. DESIGN: Thematic analysis of 27 semi-structured one-to-one interviews. SETTING: Two workshops were conducted in 2021. PARTICIPANTS: We recruited 27 study participants aged 16-24 (60% male). Sixteen (59%) participants were refugee and asylum seekers (RAS). RESULTS: Two main themes were generated: (1) Online imagery of self-harm captured perceived motivations for sharing such images, the potential impacts on others and possible need of censorship. This theme was characterised by mixed attitudes towards motivations for sharing, with some perceiving this as attention seeking, while others thought of it as help seeking or sharing of pain. Overall, participants agreed that images of self-harm can be triggering and should include trigger warnings. (2) Data sharing for mental health and self-harm research captured views on the use of social media posts and images for research purposes, and levels of trust in public and private organisations. It outlined positive views on their data being shared for research for public benefit, but highlighted issues of consent. The two most trusted organisations to hold and conduct research were the National Health Service and Universities. Participants from the RAS group were more inclined to agree to their data being used and had higher levels of trust in government. CONCLUSION: Young people care about their privacy and use of their data even when it is publicly available. Coproduction with young people of resources to support understanding and develop innovative solutions to gaining informed consent for data sharing and research for public benefit is required. Young people from excluded communities, post-immigration RAS and males should be purposively involved in future social media research.

PEPhub: a database, web interface, and API for editing, sharing, and validating biological sample metadata.

BACKGROUND: As biological data increase, we need additional infrastructure to share them and promote interoperability. While major effort has been put into sharing data, relatively less emphasis is placed on sharing metadata. Yet, sharing metadata is also important and in some ways has a wider scope than sharing data themselves. RESULTS: Here, we present PEPhub, an approach to improve sharing and interoperability of biological metadata. PEPhub provides an API, natural-language search, and user-friendly web-based sharing and editing of sample metadata tables. We used PEPhub to process more than 100,000 published biological research projects and index them with fast semantic natural-language search. PEPhub thus provides a fast and user-friendly way to finding existing biological research data or to share new data. AVAILABILITY: https://pephub.databio.org.

Perspectives of healthcare professionals and people living with HIV in dialogue: on information sharing to improve communication at the consultation.

We report on a qualitative Group Survey study involving four healthcare professionals (HCPs) and eight people living with HIV who were recipients of care in the United Kingdom (UK). The survey aimed to bring participants' perspectives into dialogue and establish consensus about how communication between HCPs delivering HIV care and their patients could be improved in the context of the routine care consultation. Responses from both parties were anonymously collated, thematically analysed, and shared back with participants in two subsequent survey rounds to support consensus-building on matters of concern and identify thematic insights. In this paper, we report three themes for informing future designs of tools and services to support communication between patients and HCPs: Patient-clinician relationship for trusted sharing; Self-reporting psychosocial information to support Whole-person care; and Perceived barriers for online trusted sharing with HCPs. Our findings highlight key areas of concern and further investigation is needed to understand how self-reported information may be meaningfully captured, interpreted and processed by HCPs in ways that are trusted by patients who voice privacy and security concerns.

YouTube videos on lymphedema as an information source for Spanish speaking breast cancer survivors.

BACKGROUND: Breast cancer-related lymphedema in the upper limb remains one of the most distressful complications of breast cancer treatment. YouTube is considered a potential digital resource for population health and decision making. However, access to inadequate information or misinformation could have undesirable impacts. This cross-sectional study aimed to evaluate the reliability, quality and content of YouTube videos on lymphedema as an information source for Spanish-speaking breast cancer survivors. METHODS: A search of YouTube was conducted in January 2023 using the key words "breast cancer lymphedema" and "lymphedema arm breast cancer." Reliability and quality of the videos were evaluated using the Discern tool, content, source of production, number of likes, comments, views, duration, Video Power Index, likes ratio, view ratio and age on the platform. RESULTS: Amongst the 300 Spanish language videos identified on YouTube, 35 were selected for analysis based on the inclusion and exclusion criteria. Of the 35 selected videos, 82.9% (n = 29) were developed by healthcare or academic professionals and 17.1% (n = 9) by others. Reliability (p < 0.017) and quality (p < 0.03) were higher in the videos made by professionals. The Discern total score (r = 0.476; p = 0.004), reliability (r = 0.472; p = 0.004) and quality (r = 0.469; p = 0.004) were positively correlated with the duration of the videos. CONCLUSIONS: Our findings provide a strong rationale for educating breast cancer survivors seeking lymphedema information to select videos made by healthcare or academic professionals. Standardised evaluation prior to video publication is needed to ensure that the end-users receive accurate and quality information from YouTube.

Evaluating the quality and reliability of YouTube videos on myopia: a video content analysis.

PURPOSE: To evaluate the quality and reliability of YouTube videos as an educational resource about myopia. METHODS: The videos were identified by searching YouTube with the keywords 'myopia' and 'nearsightedness', using the website's default search settings. The number of views, likes, dislikes, view ratio, source of the upload, country of origin, video type, and described treatment techniques were assessed. Each video was evaluated using the DISCERN, Journal of the American Medical Association (JAMA), Ensuring Quality Information for Patients (EQIP), Health On the Net Code of Conduct Certification (HONcode), and the Global Quality Score (GQS) scales. RESULTS: A total of 112 videos were included. The classification of videos by source indicated that the top three contributors were health channels (30 videos [26.8%]), physicians (24 videos [21.4%]), and academic centers (19 videos [16.9%]). Most of these videos originated from the United States (74 videos [66.1%]) and focused on the pathophysiology (n = 89, 79.4%) and the treatment (n = 77, 68.7%) of myopia. Statistical comparisons among the groups of video sources showed no significant difference in the mean DISCERN score (p = 0.102). However, significant differences were noted in the JAMA (p = 0.011), GQS (p = 0.009), HONcode (p = 0.011), and EQIP (p = 0.002) scores. CONCLUSIONS: This study underscored the variability in the quality and reliability of YouTube videos related to myopia, with most content ranging from 'weak to moderate' quality based on the DISCERN and GQS scales, yet appearing to be 'excellent' according to the HONcode and EQIP scales. Videos uploaded by physicians generally exhibited higher standards, highlighting the importance of expert involvement in online health information dissemination. Given the potential risks of accessing incorrect medical data that can affect the decision-making processes of patients, caution should be exercised when using online content as a source of information.

Effects of the Internet-based rehabilitation information sharing program on psychological stress of family caregivers of inpatients: A non-randomized controlled study.

The psychological impact of Internet-based rehabilitation information provision on family caregivers of inpatients has not yet been investigated. This study investigated the impact of the Internet-based rehabilitation information sharing program on anxiety and depression among family caregivers of inpatients. Participants were patients admitted to a rehabilitation hospital and their families. The Internet and Communication Technology (ICT) group received weekly reports with photos and videos showing rehabilitation progress and patients' activities of daily living, whereas the control group received only conventional care. The primary outcomes were the anxiety and depression scores of family caregivers, assessed at admission, discharge, and 1 month after discharge. Eighty-three participants were followed up (ICT group, n = 43; control group, n = 40). To minimize the impact of confounding factors, propensity-score matching was performed. Significant effects on anxiety (P = .03) and depression (P = .049) were found in the ICT group compared with the control group. The median difference in anxiety scores from discharge to 1 month post-discharge was -1.0 (interquartile range [IQR]: -2.0 to 0.8) in the ICT group versus 1.0 (IQR: -1.0 to 2.0) in the control group. The median difference in depression scores from admission to discharge was 0.5 (IQR: -1.0 to 2.8) in the ICT group and 2.0 (IQR: 1.0-3.8) in the control group. The Internet-based rehabilitation information sharing program may help reduce the family caregivers' psychological stress, enabling improved patient care.