ConectAR: Collaborative network of patients with asthma and carers actively involved in health research: a protocol for patient and public involvement
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Authors Information
1Department of Community Medicine, Health Information and Decision (MEDCIDS), Faculty of Medicine, University of Porto, Porto, Portugal
2Center for Health Technology and Services Research (CINTESIS.UP), University of Porto, Porto, Portugal
3Centro Hospitalar Vila Nova de Gaia Espinho (CHVNGE), Vila Nova de Gaia, Porto, Portugal
4Human Reproduction Unit, Centro Hospitalar e Universitário de Coimbra, Coimbra, Portugal
5Instituto de Ciências Biomédicas Abel Salazar, University of Porto, Porto, Portugal
6Department of Design, Faculty of Fine Arts, University of Porto, Porto, Portugal
7Pneumology Unit, Hospitais da Universidade de Coimbra, Centro Hospitalar e Universitário de Coimbra, Coimbra, Portugal
8Centre of Pneumology, Faculty of Medicine, University of Coimbra, Coimbra, Portugal
9Basic and Clinical Immunology Unit, Department of Pathology, Faculty of Medicine, University of Porto, Portugal
10Centre for Media and Communication, University of Passau, Passau, Germany
11Center for Health Technology and Services Research (CINTESIS.UA), School of Health Sciences, University of Aveiro, Aveiro, Portugal
12Allergy Unit, Instituto CUF Porto e Hospital CUF Porto, Porto, Portugal
13Imperial NIHR Patient Safety Translational Research Centre, Institute of Global Health Innovation, Imperial College London, London, U.K.
*The authors contributed equally to this work
History
Published: 09 March 2022
Accepted: 07 March 2022
Received: 07 January 2022
SUMMARY
Background. Patients and Public Involvement in every stage of the patient-centered health research cycle is the key to the development of innovative solutions with an impact on patients’ care. Methods. This protocol describes the development of ConectAR, a network to promote the involvement of patients with asthma and their carers in the health research cycle. Results. This protocol comprehends 4 tasks: 1) define the mission, vision, governance and activities of the network through focus groups; 2) establish the communication strategy and tools; 3) test the feasibility of the network in a Delphi study on the research priorities for asthma in Portugal; 4) coordination and dissemination activities. Conclusions. This network will improve research by ensuring that patients and carers have an active role in the co-creation of impactful solutions for asthma.
