Please use this identifier to cite or link to this item: http://hdl.handle.net/1942/49146
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dc.contributor.authorMazzoli, Mattia-
dc.contributor.authorVarela-Lasheras, Irma-
dc.contributor.authorCaetano, Constantino Pereira-
dc.contributor.authorLeite, Andreia-
dc.contributor.authorHERMANS, Lisa-
dc.contributor.authorHENS, Niel-
dc.contributor.authorTurkmen, Polen-
dc.contributor.authorKalimeri, Kyriaki-
dc.contributor.authorFerres, Leo-
dc.contributor.authorCattuto, Ciro-
dc.contributor.authorPAOLOTTI, Daniela-
dc.contributor.authorVerhulst, Stefaan-
dc.date.accessioned2026-05-26T13:19:25Z-
dc.date.available2026-05-26T13:19:25Z-
dc.date.issued2026-
dc.date.submitted2026-05-26T13:11:12Z-
dc.identifier.citationJournal of Medical Internet Research, 28 (Art N° e85540)-
dc.identifier.urihttp://hdl.handle.net/1942/49146-
dc.description.abstractThe 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.-
dc.description.sponsorshipThis project was supported by the ESCAPE project (101095619), funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Health and Digital Executive Agency. Neither the European Union nor the granting authority can be held responsible for them. MM, PT, LF, KK, CC, DP, and SV acknowledge support from the Lagrange Project of the ISI Foundation, funded by Fondazione CRT. LF acknowledges support from the Fondo de Investigación y Desarrollo en Salud, Fonis, Project SA24I0124.-
dc.language.isoen-
dc.publisherJMIR PUBLICATIONS, INC-
dc.rightsMattia 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.-
dc.subject.othernontraditional data-
dc.subject.otherpandemic preparedness-
dc.subject.otherpandemic response-
dc.subject.otherdata science-
dc.subject.otherepidemic modeling-
dc.titleNontraditional Data in Pandemic Preparedness and Response: Identifying and Addressing First- and Last-Mile Challenges-
dc.typeJournal Contribution-
dc.identifier.volume28-
local.format.pages17-
local.bibliographicCitation.jcatA1-
dc.description.notesMazzoli, M (corresponding author), ISI Fdn, Via Della Rocca 2, I-10123 Turin, Italy.-
dc.description.notesmattia.mazzoli@isi.it-
local.publisher.place130 QUEENS QUAY East, Unit 1100, TORONTO, ON M5A 0P6, CANADA-
local.type.refereedRefereed-
local.type.specifiedArticle-
local.bibliographicCitation.artnre85540-
dc.identifier.doi10.2196/85540-
dc.identifier.pmid42054597-
dc.identifier.isi001757955100001-
local.provider.typewosris-
local.description.affiliation[Mazzoli, Mattia; Turkmen, Polen; Kalimeri, Kyriaki; Ferres, Leo; Cattuto, Ciro; Paolotti, Daniela; Verhulst, Stefaan] ISI Fdn, Via Della Rocca 2, I-10123 Turin, Italy.-
local.description.affiliation[Varela-Lasheras, Irma; Caetano, Constantino Pereira; Leite, Andreia; Hermans, Lisa] Natl Inst Hlth Doctor Ricardo Jorge, Dept Epidemiol, Lisbon, Portugal.-
local.description.affiliation[Caetano, Constantino Pereira; Hermans, Lisa] NOVA Univ Lisbon, Comprehens Hlth Res Ctr, NOVA Natl Sch Publ Hlth,Clin Acad Ctr, Publ Hlth Res Ctr,Associated Lab Translat & Innova, Lisbon, Portugal.-
local.description.affiliation[Hens, Niel] Hasselt Univ, Interuniv Inst Biostat & Stat Bioinformat, Data Sci Inst, Hasselt, Belgium.-
local.description.affiliation[Hens, Niel] Univ Antwerp, Vaccine & Infect Dis Inst, Ctr Hlth Econ Res & Modelling Infect Dis, Antwerp, Belgium.-
local.description.affiliation[Turkmen, Polen; Verhulst, Stefaan] Data Tank, Brussels, Belgium.-
local.description.affiliation[Ferres, Leo] Univ Desarrollo, Data Sci Inst, Santiago, Chile.-
local.description.affiliation[Verhulst, Stefaan] NYU, GovLab, New York, NY USA.-
local.description.affiliation[Verhulst, Stefaan] Vrije Univ Brussels, Interuniv Microelect Ctr, Studies Media Innovat & Technol, Brussels, Belgium.-
local.uhasselt.internationalyes-
item.fulltextWith Fulltext-
item.fullcitationMazzoli, 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 (2026) Nontraditional Data in Pandemic Preparedness and Response: Identifying and Addressing First- and Last-Mile Challenges. In: Journal of Medical Internet Research, 28 (Art N° e85540).-
item.accessRightsOpen Access-
item.contributorMazzoli, Mattia-
item.contributorVarela-Lasheras, Irma-
item.contributorCaetano, Constantino Pereira-
item.contributorLeite, Andreia-
item.contributorHERMANS, Lisa-
item.contributorHENS, Niel-
item.contributorTurkmen, Polen-
item.contributorKalimeri, Kyriaki-
item.contributorFerres, Leo-
item.contributorCattuto, Ciro-
item.contributorPAOLOTTI, Daniela-
item.contributorVerhulst, Stefaan-
crisitem.journal.issn1439-4456-
crisitem.journal.eissn1438-8871-
Appears in Collections:Research publications
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