PAAI – Interactive online self-learning programme for patients with asthma: Protocol for co-creation and impact
Authors:   CINTESIS@RISE, MEDCIDS, Faculty of Medicine of the University of Porto, Porto, Portugal, Jácome Cristina , Fonseca Nancy ,   CINTESIS – Center for Health Technology and Services Research, University of Porto, Porto, Portugal, Rodrigues Tânia ,   CINTESIS – Center for Health Technology and Services Research, University of Porto, Porto, Portugal,   Centro Hospitalar Vila Nova de Gaia Espinho, Vila Nova de Gaia, Portugal,   MEDCIDS – Department of Community Medicine, Information and Health Decision Sciences, Faculty of Medicine, University of Porto, Porto, Portugal, Fernandes Silvana ,   CINTESIS – Center for Health Technology and Services Research, University of Porto, Porto, Portugal,   Human Reproduction Unit, Centro Hospitalar Universitário de Coimbra, Coimbra, Portugal, Costa Emília ,   Design Department, Faculty of Fine Arts, University of Porto, Porto, Portugal, Amaral Rita ,   CINTESIS@RISE, MEDCIDS, Faculty of Medicine of the University of Porto, Porto, Portugal, Matos Paula ,   CINTESIS – Center for Health Technology and Services Research, University of Porto, Porto, Portugal, Areia Margarida ,   Allergy and Clinical Immunology Unit, Centro Hospitalar Vila Nova de Gaia/Espinho, Vila Nova de Gaia, Portugal, Dias Liliana ,   Allergy and Clinical Immunology Unit, Centro Hospitalar Vila Nova de Gaia/Espinho, Vila Nova de Gaia, Portugal, Vilaverde Marisa ,   Faculty of Medicine, University of Porto, Porto, Portugal, Loureiro Cláudia ,   Pneumology Unit, Hospitais da Universidade de Coimbra, Centro Hospitalar e Universitário de Coimbra, Coimbra, Portugal, Boechat José ,   CINTESIS – Center for Health Technology and Services Research, University of Porto, Porto, Portugal,   Basic and Clinical Immunology, Department of Pathology, Faculty of Medicine of the University of Porto, Porto, Portugal, Reis António ,   Media and Communication Department, University of Passau, Passau, Germany, Figueiredo Daniela ,   CINTESIS@RISE, University of Aveiro, School of Health Sciences, Aveiro, Portugal, Neves Ana ,   CINTESIS@RISE, MEDCIDS, Faculty of Medicine of the University of Porto, Porto, Portugal,   Department of Primary Care and Public Health, Imperial College London, London, UK, Simões Pedro ,   CICS-UBI Health Sciences Research Centre, University of Beira Interior, CACB-Clinical Academic Centre of Beiras, Covilhã, Portugal,   UBIAir – Clinical & Experimental Lung Centre, University of Beira Interior, CACB-Clinical Academic Centre of Beiras, Covilhã, Portugal,   UCSP Fundão, ACeS Cova da Beira, Portugal, Barata Luis ,   Department of Primary Care and Public Health, Imperial College London, London, UK,   CICS-UBI Health Sciences Research Centre, University of Beira Interior, CACB-Clinical Academic Centre of Beiras, Covilhã, Portugal,   Department of Immunoallergology, Cova da Beira University Hospital Centre, CACB-Clinical Academic Centre of Beiras, Covilhã, Portugal, Fonseca João ,   CINTESIS@RISE, MEDCIDS, Faculty of Medicine of the University of Porto, Porto, Portugal,   Allergy Unit, Instituto CUF Porto e Hospital CUF Porto, Porto, Portugal, Sousa Ana ,   CINTESIS@RISE, MEDCIDS, Faculty of Medicine of the University of Porto, Porto, Portugal
Published: May 2023

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’/carers’ 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’/carers’ 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.