<?xml version="1.0" encoding="ISO-8859-1"?><article xmlns:mml="http://www.w3.org/1998/Math/MathML" xmlns:xlink="http://www.w3.org/1999/xlink" xmlns:xsi="http://www.w3.org/2001/XMLSchema-instance">
<front>
<journal-meta>
<journal-id>2301-1378</journal-id>
<journal-title><![CDATA[Informatio]]></journal-title>
<abbrev-journal-title><![CDATA[Infor]]></abbrev-journal-title>
<issn>2301-1378</issn>
<publisher>
<publisher-name><![CDATA[Facultad de Información y Comunicación. Instituto de Información.]]></publisher-name>
</publisher>
</journal-meta>
<article-meta>
<article-id>S2301-13782022000100007</article-id>
<article-id pub-id-type="doi">10.35643/info.27.1.12</article-id>
<title-group>
<article-title xml:lang="en"><![CDATA[Data and knowledge infrastructures for scientific research on humans and health in Uruguay: an experience report on a critical constructive design process]]></article-title>
<article-title xml:lang="es"><![CDATA[Infraestructuras de datos y conocimiento para la investigación científica sobre seres humanos y salud en Uruguay: relato de experiencia sobre un proceso de diseño constructivo crítico]]></article-title>
<article-title xml:lang="pt"><![CDATA[Infraestruturas de dados e conhecimento para pesquisas científicas sobre humanos e saúde no Uruguai: um relato de experiência sobre um processo de projeto construtivo crítico]]></article-title>
</title-group>
<contrib-group>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Botti]]></surname>
<given-names><![CDATA[Horacio]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Naya]]></surname>
<given-names><![CDATA[Hugo]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
<xref ref-type="aff" rid="Aaf"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Méndez]]></surname>
<given-names><![CDATA[Silvia]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Simoes]]></surname>
<given-names><![CDATA[Camila]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Martufi]]></surname>
<given-names><![CDATA[Valentina]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
</contrib-group>
<aff id="Af1">
<institution><![CDATA[,Universidad de la República Facultad de Medicina Laboratorio de Biofísica Integrativa, Departamento de Biofísica]]></institution>
<addr-line><![CDATA[ ]]></addr-line>
<country>Uruguay</country>
</aff>
<aff id="Af2">
<institution><![CDATA[,Institut Pasteur de Montevideo Unidad de Bioinformática, ]]></institution>
<addr-line><![CDATA[ ]]></addr-line>
</aff>
<aff id="Af3">
<institution><![CDATA[,Universidad de la República Facultad de Agronomía ]]></institution>
<addr-line><![CDATA[ ]]></addr-line>
<country>Uruguay</country>
</aff>
<aff id="Af4">
<institution><![CDATA[,Universidad de la República Facultad de Medicina Unidad Académica de Bioética,]]></institution>
<addr-line><![CDATA[ ]]></addr-line>
<country>Uruguay</country>
</aff>
<aff id="Af5">
<institution><![CDATA[,Oswaldo Cruz Foundation Center for Data and Knowledge Integration for Health ]]></institution>
<addr-line><![CDATA[ ]]></addr-line>
<country>Brazil</country>
</aff>
<pub-date pub-type="pub">
<day>00</day>
<month>06</month>
<year>2022</year>
</pub-date>
<pub-date pub-type="epub">
<day>00</day>
<month>06</month>
<year>2022</year>
</pub-date>
<volume>27</volume>
<numero>1</numero>
<fpage>7</fpage>
<lpage>54</lpage>
<copyright-statement/>
<copyright-year/>
<self-uri xlink:href="http://www.scielo.edu.uy/scielo.php?script=sci_arttext&amp;pid=S2301-13782022000100007&amp;lng=en&amp;nrm=iso"></self-uri><self-uri xlink:href="http://www.scielo.edu.uy/scielo.php?script=sci_abstract&amp;pid=S2301-13782022000100007&amp;lng=en&amp;nrm=iso"></self-uri><self-uri xlink:href="http://www.scielo.edu.uy/scielo.php?script=sci_pdf&amp;pid=S2301-13782022000100007&amp;lng=en&amp;nrm=iso"></self-uri><abstract abstract-type="short" xml:lang="en"><p><![CDATA[Abstract Data-centrism, precision health, data-science and open science are factors transforming health research, healthcare and health policy. The COVID-19 pandemic interacted with the former and revealed some deficiencies of the latter. This has in turn stimulated disciplinary clashes, interdisciplinary elaborations and political conflicts, concentrated around the techno-scientific, political and societal changes needed to cope with the complex health problems that were and will be challenging our societies (inequity, poverty, pandemics, climate change, reemerging diseases, etc). Herein, as a continuation of an interdisciplinary dialogue initiated in 2018 with the &#8220;Data and Information Sciences Applied to Human Health&#8221; project (CIDASH for short), we put forward the idea of planning a data-centric, open, health research infrastructure, interoperable with the integral national health system and with national health registries. We aimed to identify and analyze from interdisciplinary and trans-disciplinary perspectives and based on our experiences in Uruguay the opportunities, concerns and challenges regarding the implementation of an open health research infrastructure (OSHRI). Our specific objectives were: i) to provide a brief account of our experience in human health research in Uruguay; ii) to reflect on the perceived opportunities, challenges, issues and potential solutions in human health research from the scientific, methodological, technical, ethical and regulatory point of view; iii) to elaborate on and propose structuring pillars for future open data infrastructures for human health research in Uruguay. The methodology we followed to report our experience was qualitative, interpretative and deliberative. Results include a list of problems and design pillars identified in relation of the creation of an OSHRI. To discuss these results we took the Centre for the Integration of Health Data and Knowledge (CIDACS) in Salvador de Bahía (Brazil) as an example of an installed and running open science health research infrastructure that warrants access to population-size data with proper ethical and scientific standards. After deliberation on the above-mentioned experiences we found that this report could bring us a step closer in the way of engaging with participatory research and change from within the science community.]]></p></abstract>
<abstract abstract-type="short" xml:lang="es"><p><![CDATA[resumen está disponible en el texto completo]]></p></abstract>
<abstract abstract-type="short" xml:lang="pt"><p><![CDATA[Resumo Centrismo de dados, saúde de precisão, ciência de dados e ciência aberta são fatores que transformam a pesquisa em saúde, a saúde e a política de saúde. A pandemia de COVID-19 interagiu com os primeiros e revelou algumas deficiências dos segundos. Isso, por sua vez, estimulou confrontos disciplinares, elaborações interdisciplinares e conflitos políticos, concentrados em torno das mudanças tecno-científicas, políticas e sociais necessárias para lidar com os complexos problemas de saúde que desafiaram e desafiarão nossas sociedades (desigualdade, pobreza, pandemias, mudanças climáticas, doenças reemergentes etc.). Aqui, como uma continuação de um diálogo interdisciplinar iniciado em 2018 com o projeto &#8220;Ciências de Dados e Informação Aplicadas à Saúde Humana&#8221; (CIDASH), apresentamos a ideia de planejar uma infraestrutura de pesquisa em saúde centrada em dados, aberta e interoperável com o sistema nacional de saúde integral e com os registros nacionais de saúde. Nosso objetivo foi identificar e analisar, a partir de perspectivas interdisciplinares e transdisciplinares e com base em nossas experiências no Uruguai, as oportunidades, preocupações e desafios relacionados à implementação de uma infraestrutura aberta de pesquisa em saúde. Nossos objetivos específicos foram: i) apresentar um breve relato da nossa experiência em pesquisa em saúde humana no Uruguai; ii) refletir sobre as oportunidades, desafios, questões e potenciais soluções percebidas na pesquisa em saúde humana do ponto de vista científico, metodológico, técnico, ético e regulatório; iii) elaborar e propor pilares estruturantes para futuras infraestruturas de dados abertos para pesquisa em saúde humana no Uruguai. A metodologia utilizada foi qualitativa, interpretativa e deliberativa. Os resultados incluem uma lista de problemas e pilares de design identificados em relação à criação de uma infraestrutura de dados abertos para pesquisa em saúde humana. Para discutir esses resultados, tomamos o Centro de Integração de Dados e Conhecimentos em Saúde (CIDACS) em Salvador da Bahia (Brasil) como um exemplo de infraestrutura de pesquisa em saúde de ciência aberta instalada e em execução que provê acesso a dados populacionais garantindo o respeito de padrões éticos e científicos. Após deliberação sobre as experiências acima mencionadas, descobrimos que este relatório poderia nos aproximar um pouco mais na maneira de nos engajarmos com a pesquisa participativa e a mudança dentro da comunidade científica.]]></p></abstract>
<kwd-group>
<kwd lng="es"><![CDATA[Ciencia Abierta]]></kwd>
<kwd lng="es"><![CDATA[Infraestructuras de Investigación]]></kwd>
<kwd lng="es"><![CDATA[Investigación en Salud]]></kwd>
<kwd lng="es"><![CDATA[Bioética]]></kwd>
<kwd lng="es"><![CDATA[Biopolítica]]></kwd>
<kwd lng="es"><![CDATA[Causalidad.]]></kwd>
<kwd lng="en"><![CDATA[Open Science]]></kwd>
<kwd lng="en"><![CDATA[Research Infrastructures]]></kwd>
<kwd lng="en"><![CDATA[Health Research]]></kwd>
<kwd lng="en"><![CDATA[Bioethics]]></kwd>
<kwd lng="en"><![CDATA[Biopolitics]]></kwd>
<kwd lng="en"><![CDATA[Causality]]></kwd>
<kwd lng="pt"><![CDATA[Ciência Aberta]]></kwd>
<kwd lng="pt"><![CDATA[Infraestruturas de Pesquisa]]></kwd>
<kwd lng="pt"><![CDATA[Pesquisa em Saúde]]></kwd>
<kwd lng="pt"><![CDATA[Bioética]]></kwd>
<kwd lng="pt"><![CDATA[Biopolítica]]></kwd>
<kwd lng="pt"><![CDATA[Causalidade]]></kwd>
</kwd-group>
</article-meta>
</front><back>
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