Development of the PANDEM-2 Dashboard: participatory approach to build a tool to strengthen pandemic management (Preprint)

The COVID-19 pandemic exposed challenges in pandemic management, particularly in real-time data sharing and effective decision-making. Data protection concerns and the lack of data interoperability and standardization hindered the collection, analysis, and interpretation of critical information. Effective data visualization and customization are essential to facilitate decision-making. This study describes the development of the PANDEM-2 dashboard, a system providing a standardized and interactive platform for decision-making in pandemic management. It outlines the participatory approaches used to involve expert end users in its development and addresses key considerations of privacy, data protection, and ethical and social issues. Development was informed by a review of 25 publicly available COVID-19 dashboards, leading to the creation of a visualization catalog. User requirements were gathered through workshops and consultations with 20 experts from various health care and public health professions in 13 European Union countries. These were further refined by mapping variables and indicators required to fulfill the identified needs. Through a participatory design process, end users interacted with a preprototype platform, explored potential interface designs, and provided feedback to refine the system's components. Potential privacy, data protection, and ethical and social risks associated with the technology, along with mitigation strategies, were identified through an iterative impact assessment. Key variables incorporated into the PANDEM-2 dashboard included case rates, number of deaths, mortality rates, hospital resources, hospital admissions, testing, contact tracing, and vaccination uptake. Cases, deaths, and vaccination uptake were prioritized as the most relevant and readily available variables. However, data gaps, particularly in contact tracing and mortality rates, highlighted the need for better data collection and reporting mechanisms. User feedback emphasized the importance of diverse data visualization formats combining different data types, as well as analyzing data across various time frames. Users also expressed interest in generating custom visualizations and reports, especially on the impact of government interventions. Participants noted challenges in data reporting, such as inconsistencies in reporting levels, time intervals, the need for standardization between member states, and General Data Protection Regulation concerns for data sharing. Identified risks included ethical concerns (accessibility, user autonomy, responsible use, transparency, and accountability), privacy and data protection (security and access controls and data reidentification), and social issues (unintentional bias, data quality and accuracy, dependency on technology, and collaborative development). Mitigation measures focused on designing user-friendly interfaces, implementing robust security protocols, and promoting cross-member state collaboration. The PANDEM-2 dashboard provides an adaptable, user-friendly platform for pandemic preparedness and response. Our findings highlight the critical role of data interoperability, cross-border collaboration, and custom IT tools in strengthening future health crisis management. They also offer valuable insights into the challenges and opportunities in developing IT solutions to support pandemic preparedness.