Data challenges for international health emergencies: lessons learned from ten international COVID-19 driver projects.

The COVID-19 pandemic highlighted the importance of international data sharing and access to improve health outcomes for all. The International COVID-19 Data Alliance (ICODA) programme enabled 12 exemplar or driver projects to use existing health-related data to address major research questions relating to the pandemic, and developed data science approaches that helped each research team to overcome challenges, accelerate the data research cycle, and produce rapid insights and outputs. These approaches also sought to address inequity in data access and use, test approaches to ethical health data use, and make summary datasets and outputs accessible to a wider group of researchers. This Health Policy paper focuses on the challenges and lessons learned from ten of the ICODA driver projects, involving researchers from 19 countries and a range of health-related datasets. The ICODA programme reviewed the time taken for each project to complete stages of the health data research cycle and identified common challenges in areas such as data sharing agreements and data curation. Solutions included provision of standard data sharing templates, additional data curation expertise at an early stage, and a trusted research environment that facilitated data sharing across national boundaries and reduced risk. These approaches enabled the driver projects to rapidly produce research outputs, including publications, shared code, dashboards, and innovative resources, which can all be accessed and used by other research teams to address global health challenges.

A co-designed evaluation study to identify Breastfeeding Knowledge of General Practitioners' and Practice Nurses'.

The World Health Organization and American Academy of Paediatrics recommend exclusive breastfeeding until 6 months of age, with continued breastfeeding along with complementary solid foods for up to 2 years and beyond. Despite the well-established importance of breastfeeding, Irish rates remain the lowest in Europe. Healthcare professionals' breastfeeding knowledge and skills have a positive impact on increasing breastfeeding rates. There is limited evidence of the knowledge, attitudes or practices of general practitioners (GPs) and general practice nurses (GPNs), which is essential to breastfeeding in Ireland. The aim of this study was to evaluate the breastfeeding knowledge, attitudes and practices of GPs and GPNs in one community healthcare organisation (CHO) in Ireland. A co-designed evaluation study was used following low-risk ethical exemption (LS-LR-22-161). A modified version of a validated breastfeeding questionnaire was developed. A Project Steering Committee was established that included patient, and public involvement stakeholders. The anonymised survey was distributed via online Qualtrics platform (November 2022-February 2023). STROBE Guidelines were utilised. The overall response rate was 25.9% (n = 121) and valid responses were reported in the article. The total population size was n = 468 (GPs n = 290 and GPNs n = 178). Our pilot study identified that 42.7% (n = 47/110) of respondents never attended a breastfeeding education programme, and 53.9% (n = 55/102) identified that their knowledge could be improved. The majority of respondents, 92.9% (n = 92/99) wish to complete further education in breastfeeding. The results of this pilot study in one CHO in Ireland indicate a gap in knowledge and a need for specific breastfeeding and lactation theoretical and skills training for GPs and GPNs working in primary care to support, promote and protect breastfeeding.

Towards a standardised cross-sectoral data access agreement template for research: a core set of principles for data access within trusted research environments.

Introduction: Trusted Research Environments (TREs) are secure computing environments that provide access to data for approved researchers to use in studies that can save and improve lives. TREs rely on Data Access Agreements (DAAs) to bind researchers and their organisations to the terms and conditions of accessing the infrastructure and data use. However, DAAs can be overly lengthy, complex, and can contain outdated terms from historical data sharing agreements for physical exchange of data. This is often cited as a cause of significant delays to legal review and research projects starting. Objectives: The aim was to develop a standardised DAA optimised for data science in TREs across the UK and framed around the 'Five Safes framework' for trustworthy data use. The DAA is underpinned by principles of data access in TREs, the development of which is described in this paper. Methods: The Pan-UK Data Governance Steering Group of the UK Health Data Research Alliance led the development of a core set of data access principles. This was informed by a benchmarking exercise of DAAs used by established TREs and consultation with public members and stakeholders. Results: We have defined a core set of principles for TRE data access that can be mapped to a common set of DAA terms for UK-based TREs. Flexibility will be ensured by including terms specific to TREs or specific data/data owners in customisable annexes. Public views obtained through public involvement and engagement (PIE) activities are also reported. Conclusions: These principles provide the foundation for a standardised UK TRE DAA template, designed to support the growing ecosystem of TREs. By providing a familiar structure and terms, this template aims to build trust among data owners and the UK public and to provide clarity to researchers on their obligations to protect the data. Widespread adoption is intended to accelerate health data research by enabling faster approval of projects, ultimately enabling more timely and effective research.