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Public involvement in chronic respiratory diseases research: A qualitative study of patients', carers' and citizens' perspectives.

Margarida AreiaLiliana P DiasPaula MatosDaniela Maria Pias de FigueiredoAna Luísa NevesEmília D da CostaClaudia Chaves LoureiroJosé Laerte BoechatAntónio B ReisPedro SimõesLuís Taborda-BarataJoão Almeida FonsecaAna Sá-SousaCristina Jácome
Published in: Health expectations : an international journal of public participation in health care and health policy (2024)
In Portugal, chronic respiratory patients do not have an active role as 'coinvestigators'. This study aimed to acknowledge if patients and citizens considered a patient and public involvement network useful, whose main purpose would be to facilitate communication between patients and researchers. A study based on online group interviews was carried out with patients with chronic respiratory diseases and interested citizens, both recruited on social media platforms. Participants considered that bringing together patients, carers, researchers and healthcare professionals is valuable because sharing different experiences and perspectives may help patients to improve their daily lives and increase research quality. In conclusion, patients agree that implementing a collaborative network with researchers and healthcare professionals and participating in the health research cycle is quite preponderant. Acknowledging what can help and deter this network may be beneficial to implementing this type of initiative in Portugal.
Keyphrases
  • end stage renal disease
  • ejection fraction
  • social media
  • chronic kidney disease
  • newly diagnosed
  • healthcare
  • mental health
  • emergency department
  • health information