Patient and public involvement in research: from tokenistic box ticking to valued team members.
Community engagement
Health
Patient and public involvement
Research
Journal
BMC medicine
ISSN: 1741-7015
Titre abrégé: BMC Med
Pays: England
ID NLM: 101190723
Informations de publication
Date de publication:
13 04 2020
13 04 2020
Historique:
received:
10
10
2019
accepted:
28
02
2020
entrez:
14
4
2020
pubmed:
14
4
2020
medline:
18
9
2020
Statut:
epublish
Résumé
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. 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. With adaptation, the AUKCAR PPI model can be translated to international contexts.
Sections du résumé
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.
Identifiants
pubmed: 32279658
doi: 10.1186/s12916-020-01544-7
pii: 10.1186/s12916-020-01544-7
pmc: PMC7153227
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
79Subventions
Organisme : Asthma UK (GB)
ID : AUK-AC-2018-01
Pays : International
Organisme : National Institute for Health Research (GB)
ID : 16/136/109
Pays : International
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