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Patient and public involvement in research: from tokenistic box ticking to valued team members.
Jackson, Tracy; Pinnock, Hilary; Liew, Su May; Horne, Elsie; Ehrlich, Elisabeth; Fulton, Olivia; Worth, Allison; Sheikh, Aziz; De Simoni, Anna.
Afiliação
  • Jackson T; Asthma UK Centre for Applied Research, University of Edinburgh, Edinburgh, UK. tracy.jackson@ed.ac.uk.
  • Pinnock H; Usher Institute, University of Edinburgh, Edinburgh, UK. tracy.jackson@ed.ac.uk.
  • Liew SM; NIHR Global Health Research Unit on Respiratory Health, University of Edinburgh, Edinburgh, UK. tracy.jackson@ed.ac.uk.
  • Horne E; Asthma UK Centre for Applied Research, University of Edinburgh, Edinburgh, UK.
  • Ehrlich E; Usher Institute, University of Edinburgh, Edinburgh, UK.
  • Fulton O; NIHR Global Health Research Unit on Respiratory Health, University of Edinburgh, Edinburgh, UK.
  • Worth A; NIHR Global Health Research Unit on Respiratory Health, University of Edinburgh, Edinburgh, UK.
  • Sheikh A; Department of Primary Care Medicine, University of Malaya, Kuala Lumpur, Malaysia.
  • De Simoni A; Asthma UK Centre for Applied Research, University of Edinburgh, Edinburgh, UK.
BMC Med ; 18(1): 79, 2020 04 13.
Article em En | MEDLINE | ID: mdl-32279658
BACKGROUND: Patient and public involvement (PPI) in research envisages a relationship built throughout the lifespan of a research project between academics, clinicians and PPI colleagues in order to inform, plan, execute and, in due course, disseminate and translate research. To be meaningful, all stakeholders need to actively engage in this exchange of expertise. However, despite some funders requiring PPI plans to be included in grant applications, there remains a gap between what is expected and what is delivered. MAIN BODY: As an exemplar, we reflect on how, in the Asthma UK Centre for Applied Research (AUKCAR), we set out to create a supportive, organised environment with the overarching value of 'keeping patients at the heart of everything we do'. The key has been in planning and creating a suitably funded organisational infrastructure with dedicated PPI researchers along with the development of and expectation to abide by an agreed set of norms and values. Specifically, expecting AUKCAR PhD students and early career researchers to engage with PPI has established a working mode that we hope will last. Regular interactions and proactive Patient Leads increase PPI network cohesion. CONCLUSION: With adaptation, the AUKCAR PPI model can be translated to international contexts.
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Participação do Paciente / Projetos de Pesquisa / Participação da Comunidade Tipo de estudo: Prognostic_studies Limite: Humans Idioma: En Revista: BMC Med Assunto da revista: MEDICINA Ano de publicação: 2020 Tipo de documento: Article

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Participação do Paciente / Projetos de Pesquisa / Participação da Comunidade Tipo de estudo: Prognostic_studies Limite: Humans Idioma: En Revista: BMC Med Assunto da revista: MEDICINA Ano de publicação: 2020 Tipo de documento: Article