Towards the tipping point of FAIR implementation

This article explores the global implementation of the FAIR Guiding Principles for scientific management and data stewardship, which provide that data should be findable, accessible, interoperable and reusable. The implementation of these principles is designed to lead to the stewardship of data as FAIR digital objects and the establishment of the Internet of FAIR Data and Services (IFDS). If implementation reaches a tipping point, IFDS has the potential to revolutionize how data is managed by making machine and human readable data discoverable for reuse. Accordingly, this article examines the expansion of the implementation of FAIR Guiding Principles, especially how and in which geographies (locations) and areas (topic domains) implementation is taking place. A literature review of academic articles published between 2016 and 2019 on the use of FAIR Guiding Principles is presented. The investigation also includes an analysis of the domains in the IFDS Implementation Networks (INs). Its uptake has been mainly in the Western hemisphere. The investigation found that implementation of FAIR Guiding Principles has taken firm hold in the domain of bio and natural sciences. To achieve a tipping point for FAIR implementation, is now time to ensure the inclusion of non-European ascendants and of other scientific domains. Apart from equal opportunity and genuine global partnership issues, a permanent European bias poses challenges with regard to the representativeness and validity of data and could limit the potential of IFDS to reach across continental boundaries. The article concludes that, despite efforts to be inclusive, acceptance of the FAIR Guiding Principles and IFDS in different scientific communities is limited and there is a need to act now to prevent dampening of the momentum in the development and implementation of the IFDS. It is further concluded that policy entrepreneurs and the GO FAIR INs may contribute to making the FAIR Guiding Principles more flexible in including different research epistemologies, especially through its GO CHANGE pillar. LIACS-Managemen

Knowledge, Attitudes, and Practices Regarding COVID-19 among Healthcare Workers in Uganda: A Cross-Sectional Survey.

Healthcare workers (HCWs) are at high risk of COVID-19. However, data on HCWs' knowledge, attitudes, and practices (KAP) toward COVID-19 are limited. Between September and November 2020, we conducted a questionnaire-based COVID-19 KAP survey among HCWs at three hospitals in Uganda. We used Bloom's cut-off of ≥80% to determine sufficient knowledge, good attitude, and good practice, and multivariate Poisson regression with robust variance for statistical analysis. Of 717 HCWs invited to participate, 657 (91.6%) agreed and were enrolled. The mean age (standard deviation) of enrollees was 33.2 (10.2) years; most were clinical HCWs (64.7%) and had advanced secondary school/other higher-level education (57.8%). Overall, 83.9% had sufficient knowledge, 78.4% had a positive attitude, and 37.0% had good practices toward COVID-19. Factors associated with KAP were: Knowledge: being a clinical HCW (aRR: 1.12; 95% CI: 1.02-1.23) and previous participation in health research (aRR: 1.10; 95% CI: 1.04-1.17); Attitude: age > 35 years (aRR: 0.88; 95% CI: 0.79-0.98); Practice: being a clinical HCW (aRR: 1.91; 95% CI: 1.41-2.59). HCWs in Uganda have good knowledge and positive attitude but poor practices towards COVID-19. Differences in COVID-19 KAP between clinical and non-clinical HCWs could affect uptake of COVID-19 interventions including vaccination

Design of a FAIR digital data health infrastructure in Africa for COVID-19 reporting and research

The limited volume of COVID-19 data from Africa raises concerns for global genome research, which requires a diversity of genotypes for accurate disease prediction, including on the provenance of the new SARS-CoV-2 mutations. The Virus Outbreak Data Network (VODAN)-Africa studied the possibility of increasing the production of clinical data, finding concerns about data ownership, and the limited use of health data for quality treatment at point of care. To address this, VODAN Africa developed an architecture to record clinical health data and research data collected on the incidence of COVID-19, producing these as human- and machine-readable data objects in a distributed architecture of locally governed, linked, human- and machine-readable data. This architecture supports analytics at the point of care and-through data visiting, across facilities-for generic analytics. An algorithm was run across FAIR Data Points to visit the distributed data and produce aggregate findings. The FAIR data architecture is deployed in Uganda, Ethiopia, Liberia, Nigeria, Kenya, Somalia, Tanzania, Zimbabwe, and Tunisia.Computer Systems, Imagery and Medi

Examining oral pre-exposure prophylaxis (PrEP) literacy among participants in an HIV vaccine trial preparedness cohort study

Background: PrEP literacy is influenced by many factors including the types of information available and how it is interpreted. The level of PrEP literacy may influence acceptability and uptake. Methods: We conducted 25 in-depth interviews in a HIV vaccine trial preparedness cohort study. We explored what participants knew about PrEP, sources of PrEP knowledge and how much they know about PrEP. We used the framework approach to generate themes for analysis guided by the Social Ecological Model and examined levels of PrEP literacy using the individual and interpersonal constructs of the SEM. Results: We found that PrEP awareness is strongly influenced by external factors such as social media and how much participants know about HIV treatment and prevention in the local community. However, while participants highlighted the importance of the internet/social media as a source of information about PrEP they talked of low PrEP literacy in their communities. Participants indicated that their own knowledge came as a result of joining the HIV vaccine trial preparedness study. However, some expressed doubts about the effectiveness of the drug and worried about side effects. Participants commented that at the community level PrEP was associated with being sexually active, because it was used to prevent the sexual transmission of HIV. As a result, some participants commented that one could feel judged by the health workers for asking for PrEP at health facilities in the community. Conclusion: The information collected in this study provided an understanding of the different layers of influence around individuals that are important to address to improve PrEP acceptability and uptake. Our findings can inform strategies to address the barriers to PrEP uptake, particularly at structural and community levels. Trial registration: https://clinicaltrials.gov/ct2/show/NCT04066881

Examining oral pre-exposure prophylaxis (PrEP) literacy among participants in an HIV vaccine trial preparedness cohort study

Background PrEP literacy is influenced by many factors including the types of information available and how it is interpreted. The level of PrEP literacy may influence acceptability and uptake. Methods We conducted 25 in-depth interviews in a HIV vaccine trial preparedness cohort study. We explored what participants knew about PrEP, sources of PrEP knowledge and how much they know about PrEP. We used the framework approach to generate themes for analysis guided by the Social Ecological Model and examined levels of PrEP literacy using the individual and interpersonal constructs of the SEM. Results We found that PrEP awareness is strongly influenced by external factors such as social media and how much participants know about HIV treatment and prevention in the local community. However, while participants highlighted the importance of the internet/social media as a source of information about PrEP they talked of low PrEP literacy in their communities. Participants indicated that their own knowledge came as a result of joining the HIV vaccine trial preparedness study. However, some expressed doubts about the effectiveness of the drug and worried about side effects. Participants commented that at the community level PrEP was associated with being sexually active, because it was used to prevent the sexual transmission of HIV. As a result, some participants commented that one could feel judged by the health workers for asking for PrEP at health facilities in the community. Conclusion The information collected in this study provided an understanding of the different layers of influence around individuals that are important to address to improve PrEP acceptability and uptake. Our findings can inform strategies to address the barriers to PrEP uptake, particularly at structural and community levels. Trial registration https://clinicaltrials.gov/ct2/show/NCT0406688

Possibility of enhancing digital health interoperability in Uganda through FAIR Data

The digital health landscape in Uganda is plagued by problems with interoperability and sustainability, due to fragmentation and a lack of integrated digital health solutions. This can be partly attributed to the absence of policies on the interoperability of data, as well as the fact that there is no common goal to make digital data and data infrastructure interoperable across the data ecosystem. The promulgation of the FAIR Guidelines in 2016 brought together various data stewards and stakeholders to adopt a common vision on data management and enable greater interoperability. This article explores the potential of enhancing digital health interoperability through FAIR by analysing the digital solutions piloted in Uganda and their sustainability. It looks at the factors that are currently hindering interoperability by examining existing digital health solutions in Uganda, such as the Digital Health Atlas Uganda (DHA-U) and Uganda Digital Health Dashboard (UDHD). The level of FAIRness of the two dashboards was determined using the FAIR Evaluation Services tool. Analysis was also carried out to discover the level of FAIRness of the digital health solutions within the dashboards and the most frequently used software applications and data standards by the different digital health interventions in Uganda

Design of a FAIR

The limited volume of COVID‐19 data from Africa raises concerns for global genome research, which requires a diversity of genotypes for accurate disease prediction, including on the provenance of the new SARS‐CoV‐2 mutations. The Virus Outbreak Data Network (VODAN)‐Africa studied the possibility of increasing the production of clinical data, finding concerns about data ownership, and the limited use of health data for quality treatment at point of care. To address this, VODAN Africa developed an architecture to record clinical health data and research data collected on the incidence of COVID‐19, producing these as human‐ and machine‐readable data objects in a distributed architecture of locally governed, linked, human‐ and machine‐readable data. This architecture supports analytics at the point of care and—through data visiting, across facilities—for generic analytics. An algorithm was run across FAIR Data Points to visit the distributed data and produce aggregate findings. The FAIR data architecture is deployed in Uganda, Ethiopia, Liberia, Nigeria, Kenya, Somalia, Tanzania, Zimbabwe, and Tunisia

Survey data on willingness to participate in COVID-19 vaccine trials among healthcare workers in three Ugandan hospitals

Survey data collected as part of a study to investigate willingness to participate in COVID-19 vaccine trials among healthcare workers. Survey was completed by 657 healthcare workers in three hospitals in Uganda. The dataset contains variables on socio-demographic information, willingness to participate in a COVID-19 vaccine trial, motivators and barriers to participation, and the effect of different hypothetical trial characteristics on willingness to participate