<?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>0871-9721</journal-id>
<journal-title><![CDATA[Revista Portuguesa de Imunoalergologia]]></journal-title>
<abbrev-journal-title><![CDATA[Rev Port Imunoalergologia]]></abbrev-journal-title>
<issn>0871-9721</issn>
<publisher>
<publisher-name><![CDATA[Sociedade Portuguesa de Alergologia e Imunologia Clínica]]></publisher-name>
</publisher>
</journal-meta>
<article-meta>
<article-id>S0871-97212023000200151</article-id>
<article-id pub-id-type="doi">10.32932/rpia.2023.04.111</article-id>
<title-group>
<article-title xml:lang="en"><![CDATA[PAAI - Interactive online self-learning programme for patients with asthma: Protocol for co-creation and impact]]></article-title>
<article-title xml:lang="pt"><![CDATA[PAAI - Programa de auto-aprendizagem interativo e online para pessoas com asma: Protocolo para cocriação e avaliação de impacto]]></article-title>
</title-group>
<contrib-group>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Jácome]]></surname>
<given-names><![CDATA[Cristina]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Fonseca]]></surname>
<given-names><![CDATA[Nancy]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Rodrigues]]></surname>
<given-names><![CDATA[Tânia]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
<xref ref-type="aff" rid="Aaf"/>
<xref ref-type="aff" rid="A a"/>
<xref ref-type="aff" rid="A4"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Fernandes]]></surname>
<given-names><![CDATA[Silvana]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
<xref ref-type="aff" rid="Aaf"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Costa]]></surname>
<given-names><![CDATA[Emília Dias da]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Amaral]]></surname>
<given-names><![CDATA[Rita]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Matos]]></surname>
<given-names><![CDATA[Paula]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Areia]]></surname>
<given-names><![CDATA[Margarida]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Dias]]></surname>
<given-names><![CDATA[Liliana]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Vilaverde]]></surname>
<given-names><![CDATA[Marisa]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Loureiro]]></surname>
<given-names><![CDATA[Cláudia Chaves]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Boechat]]></surname>
<given-names><![CDATA[José Laerte]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
<xref ref-type="aff" rid="Aaf"/>
<xref ref-type="aff" rid="A0"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Reis]]></surname>
<given-names><![CDATA[António Baía]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Figueiredo]]></surname>
<given-names><![CDATA[Daniela]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Neves]]></surname>
<given-names><![CDATA[Ana Luísa]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
<xref ref-type="aff" rid="Aaf"/>
<xref ref-type="aff" rid="A3"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Simões]]></surname>
<given-names><![CDATA[Pedro]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
<xref ref-type="aff" rid="A a"/>
<xref ref-type="aff" rid="A15"/>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Barata]]></surname>
<given-names><![CDATA[Luis Taborda]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
<xref ref-type="aff" rid="A a"/>
<xref ref-type="aff" rid="A14"/>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Fonseca]]></surname>
<given-names><![CDATA[João Almeida]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
<xref ref-type="aff" rid="Aaf"/>
<xref ref-type="aff" rid="A8"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Sá-Sousa]]></surname>
<given-names><![CDATA[Ana]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
</contrib-group>
<aff id="Af1">
<institution><![CDATA[,University of Porto Faculty of Medicine MEDCIDS]]></institution>
<addr-line><![CDATA[Porto ]]></addr-line>
<country>Portugal</country>
</aff>
<aff id="Af2">
<institution><![CDATA[,University of Porto CINTESIS - Center for Health Technology and Services Research ]]></institution>
<addr-line><![CDATA[Porto ]]></addr-line>
<country>Portugal</country>
</aff>
<aff id="Af3">
<institution><![CDATA[,Centro Hospitalar Vila Nova de Gaia Espinho  ]]></institution>
<addr-line><![CDATA[Vila Nova de Gaia ]]></addr-line>
<country>Portugal</country>
</aff>
<aff id="Af4">
<institution><![CDATA[,University of Porto Faculty of Medicine Information and Health Decision Sciences]]></institution>
<addr-line><![CDATA[Porto ]]></addr-line>
<country>Portugal</country>
</aff>
<aff id="Af5">
<institution><![CDATA[,Centro Hospitalar Universitário de Coimbra Human Reproduction Unit ]]></institution>
<addr-line><![CDATA[Coimbra ]]></addr-line>
<country>Portugal</country>
</aff>
<aff id="Af6">
<institution><![CDATA[,University of Porto Faculty of Fine Arts Design Department]]></institution>
<addr-line><![CDATA[Porto ]]></addr-line>
<country>Portugal</country>
</aff>
<aff id="Af7">
<institution><![CDATA[,Centro Hospitalar Vila Nova de Gaia/Espinho Allergy and Clinical Immunology Unit ]]></institution>
<addr-line><![CDATA[Vila Nova de Gaia ]]></addr-line>
<country>Portugal</country>
</aff>
<aff id="Af8">
<institution><![CDATA[,University of Porto Faculty of Medicine ]]></institution>
<addr-line><![CDATA[Porto ]]></addr-line>
<country>Portugal</country>
</aff>
<aff id="Af9">
<institution><![CDATA[,entro Hospitalar e Universitário de Coimbra Hospitais da Universidade de Coimbra Pneumology Unit]]></institution>
<addr-line><![CDATA[Coimbra ]]></addr-line>
<country>Portugal</country>
</aff>
<aff id="A10">
<institution><![CDATA[,University of Porto Faculty of Medicine Department of Pathology]]></institution>
<addr-line><![CDATA[Porto ]]></addr-line>
<country>Portugal</country>
</aff>
<aff id="A11">
<institution><![CDATA[,University of Passau Media and Communication Department ]]></institution>
<addr-line><![CDATA[Passau ]]></addr-line>
<country>Germany</country>
</aff>
<aff id="A12">
<institution><![CDATA[,University of Aveiro School of Health Sciences ]]></institution>
<addr-line><![CDATA[Aveiro ]]></addr-line>
<country>Portugal</country>
</aff>
<aff id="A13">
<institution><![CDATA[,Imperial College London Department of Primary Care and Public Health ]]></institution>
<addr-line><![CDATA[London ]]></addr-line>
<country>United Kingdom</country>
</aff>
<aff id="A14">
<institution><![CDATA[,University of Beira Interior CACB-Clinical Academic Centre of Beiras CICS-UBI Health Sciences Research Centre]]></institution>
<addr-line><![CDATA[Covilhã ]]></addr-line>
<country>Portugal</country>
</aff>
<aff id="A15">
<institution><![CDATA[,University of Beira Interior CACB-Clinical Academic Centre of Beiras UBIAir - Clinical &amp; Experimental Lung Centre]]></institution>
<addr-line><![CDATA[Covilhã ]]></addr-line>
<country>Portugal</country>
</aff>
<aff id="A16">
<institution><![CDATA[,ACeS Cova da Beira UCSP Fundão ]]></institution>
<addr-line><![CDATA[Covilhã ]]></addr-line>
<country>Portugal</country>
</aff>
<aff id="A17">
<institution><![CDATA[,Cova da Beira University Hospital Centre CACB-Clinical Academic Centre of Beiras Department of Immunoallergology]]></institution>
<addr-line><![CDATA[Covilhã ]]></addr-line>
<country>Portugal</country>
</aff>
<aff id="A18">
<institution><![CDATA[,Hospital CUF Porto Instituto CUF Porto Allergy Unit]]></institution>
<addr-line><![CDATA[Porto ]]></addr-line>
<country>Portugal</country>
</aff>
<pub-date pub-type="pub">
<day>00</day>
<month>06</month>
<year>2023</year>
</pub-date>
<pub-date pub-type="epub">
<day>00</day>
<month>06</month>
<year>2023</year>
</pub-date>
<volume>31</volume>
<numero>2</numero>
<fpage>151</fpage>
<lpage>161</lpage>
<copyright-statement/>
<copyright-year/>
<self-uri xlink:href="http://scielo.pt/scielo.php?script=sci_arttext&amp;pid=S0871-97212023000200151&amp;lng=en&amp;nrm=iso"></self-uri><self-uri xlink:href="http://scielo.pt/scielo.php?script=sci_abstract&amp;pid=S0871-97212023000200151&amp;lng=en&amp;nrm=iso"></self-uri><self-uri xlink:href="http://scielo.pt/scielo.php?script=sci_pdf&amp;pid=S0871-97212023000200151&amp;lng=en&amp;nrm=iso"></self-uri><abstract abstract-type="short" xml:lang="en"><p><![CDATA[ABSTRACT Patient and Public Involvement (PPI) in research should focus on the engagement of patients/carers in every stage of the research cycle. However, the inconsistent level of education and research experience may compromise this involvement and training and support are recommended. In Portugal, consistent training to empower patients in their health decisions, or to be involved in research is neither available nor adapted for the patients and public. Our main goal is to develop and deliver the first high-quality and comprehensive online educational programme for adult patients with asthma and their carers, based on patients&#8217;/carers&#8217; needs and preferences. The project includes four tasks. In Task 1, we will identify and organise the most important topics on asthma and health research, based on the identification of educational needs of adult patients/carers with asthma and the expertise of asthma specialists, using Delphi methodology. In Task 2, we will design and implement a high-quality, free, online self-learning programme based on reliable sources of information and on patients&#8217;/carers&#8217; preferences. In Task 3, we will assess its feasibility, satisfaction and impact. Finally, Task 4 will be centred on the management and dissemination. Patients and carers will be actively engaged in all stages of this project as co-researchers, including the writing of this protocol. By the end of this project, we expect to have implemented the first high-quality, free-of-charge, online self-learning programme on asthma and health research, adapted for adult patients with asthma and their carers. It will be available for all patients/carers not only from Portugal but also from all Lusophone countries. This programme will empower patients and carers to increase their knowledge about the disease, develop new skills and have the opportunity to learn about research. Ultimately, it will introduce the knowledge patients/carers need to represent themselves and influence health policies in Portugal successfully.]]></p></abstract>
<abstract abstract-type="short" xml:lang="pt"><p><![CDATA[RESUMO O envolvimento dos doentes e cidadãos na investigação (PPI) deve ocorrer em todas as etapas do ciclo de investigação. No entanto, a inconsistência nos níveis educacionais e na experiência de investigação pode ser um entrave significativo de uma participação ativa. Assim, ações de formação e suporte são recomendadas. Em Portugal, não existe formação específica para capacitar os doentes nas suas decisões de saúde, ou para se envolverem em investigação. O objetivo principal é desenvolver e tornar acessível o primeiro programa educacional online de elevada qualidade para doentes adultos com asma e seus cuidadores, com base nas suas necessidades e preferências. O projeto inclui 4 tarefas. Na tarefa 1 iremos identificar os tópicos mais importantes na área da asma e investigação em saúde, a partir da identificação das necessidades educacionais de doentes/cuidadores e da experiência de especialistas em asma, usando o método Delphi. Na tarefa 2 pretendemos desenhar e implementar um programa de elevada qualidade, gratuito e online, baseado em fontes de informação fiáveis e nas preferências de doentes/cuidadores. Na tarefa 3 vamos disseminar o programa e avaliar a sua exequibilidade, aceitabilidade e impacto. A tarefa 4 irá incidir na gestão e disseminação do projeto. Doentes e cuidadores estarão ativamente envolvidos em todas as tarefas do projeto como coinvestigadores, onde se inclui a escrita deste protocolo. No final deste projeto, esperamos ter implementado o primeiro programa de auto-aprendizagem de elevada qualidade, gratuito e online para a asma e investigação em saúde, adaptado para doentes/cuidadores com asma. Este programa irá capacitar doentes e cuidadores para aumentar o seu conhecimento sobre a doença, para desenvolver novas competências, e será uma oportunidade para aprenderem sobre investigação. Este programa permitirá também a introdução a conhecimentos necessários para doentes e cuidadores se fazerem representar e influenciarem as políticas em saúde em Portugal.]]></p></abstract>
<kwd-group>
<kwd lng="pt"><![CDATA[Capacitação]]></kwd>
<kwd lng="pt"><![CDATA[auto-aprendizagem]]></kwd>
<kwd lng="pt"><![CDATA[envolvimento de doentes e sociedade]]></kwd>
<kwd lng="pt"><![CDATA[ciência cidadã]]></kwd>
<kwd lng="pt"><![CDATA[e-Health]]></kwd>
<kwd lng="pt"><![CDATA[asma]]></kwd>
<kwd lng="en"><![CDATA[Empowerment]]></kwd>
<kwd lng="en"><![CDATA[self-learning]]></kwd>
<kwd lng="en"><![CDATA[patient and public involvement]]></kwd>
<kwd lng="en"><![CDATA[citizen science]]></kwd>
<kwd lng="en"><![CDATA[e-Health]]></kwd>
<kwd lng="en"><![CDATA[asthma]]></kwd>
</kwd-group>
</article-meta>
</front><back>
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