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http://hdl.handle.net/1942/49146| Title: | Nontraditional Data in Pandemic Preparedness and Response: Identifying and Addressing First- and Last-Mile Challenges | Authors: | Mazzoli, Mattia Varela-Lasheras, Irma Caetano, Constantino Pereira Leite, Andreia HERMANS, Lisa HENS, Niel Turkmen, Polen Kalimeri, Kyriaki Ferres, Leo Cattuto, Ciro PAOLOTTI, Daniela Verhulst, Stefaan |
Issue Date: | 2026 | Publisher: | JMIR PUBLICATIONS, INC | Source: | Journal of Medical Internet Research, 28 (Art N° e85540) | Abstract: | The COVID-19 pandemic served as an important test case of complementing traditional public health data with nontraditional data, such as mobility traces, social media activity, and wearable data, to inform real-time decision-making. Drawing on an expert workshop and a targeted survey of epidemic modelers in Europe, this study assesses the promise and the persistent limitations of such data in pandemic preparedness and response. We distinguish between "first-mile" challenges (obstacles to accessing and harmonizing data) and "last-mile" challenges (difficulties in translating insights into actionable policy interventions). The expert workshop, convened in March 2024 in Brussels, brought together 50 participants, including public health professionals, data scientists, policymakers, and industry leaders, to reflect on lessons learned and define strategies for better integration of nontraditional data into epidemic modeling and policymaking. The accompanying survey, gathering experiences from 29 modelers, offers empirical evidence of the barriers faced by modelers during the COVID-19 pandemic and highlights areas where key data were unavailable or underused. The experiences collected through the survey and workshop resulted in ten key actions and three overarching recommendations for public entities, data providers, and stakeholders. Our findings reveal ongoing issues with data access, quality, and interoperability, as well as institutional and cognitive barriers to evidence-based decision-making. Approximately 66% of all datasets had at least one access problem, with data sharing reluctance for nontraditional sources being double that of traditional data (30% vs 15%). Only 10% of respondents reported that they could use all the data they needed. These limitations included issues related to timeliness and granularity of data, as well as issues with linkage, comparability, and biases. To overcome these hurdles, we propose a set of enabling mechanisms, including data inventories, standardization protocols, simulation exercises, data stewardship roles, and data collaboratives. For first-mile challenges, solutions focus on technical and legal frameworks for data access. For last-mile challenges, we recommend fusion centers, decision accelerator laboratories, and networks of scientific ambassadors to bridge the gap between analysis and action. We argue that realizing the full value of nontraditional data requires a sustained investment in institutional readiness, cross-sectoral collaboration, and a shift toward a culture of data solidarity. Grounded in the lessons of the COVID-19 pandemic, the study can be used to design a roadmap for using nontraditional data to confront a broader array of public health emergencies, from climate shocks to humanitarian crises. | Notes: | Mazzoli, M (corresponding author), ISI Fdn, Via Della Rocca 2, I-10123 Turin, Italy. mattia.mazzoli@isi.it |
Keywords: | nontraditional data;pandemic preparedness;pandemic response;data science;epidemic modeling | Document URI: | http://hdl.handle.net/1942/49146 | ISSN: | 1439-4456 | e-ISSN: | 1438-8871 | DOI: | 10.2196/85540 | ISI #: | 001757955100001 | Rights: | Mattia Mazzoli, Irma Varela-Lasheras, Sónia Namorado, Constantino Pereira Caetano, Andreia Leite, Lisa Hermans, Niel Hens, Polen Türkmen, Kyriaki Kalimeri, Leo Ferres, Ciro Cattuto, Daniela Paolotti, Stefaan Verhulst. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 29.Apr.2026. This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research (ISSN 1438-8871), is properly cited. The complete bibliographic information, a link to the original publication on https://www.jmir.org/, as well as this copyright and license information must be included. | Category: | A1 | Type: | Journal Contribution |
| Appears in Collections: | Research publications |
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