Collaborating with cancer patients and informal caregivers in a European study on quality of life: protocol to embed patient and public involvement within the EUonQoL project.
Co-researchers
Oncology
Patient and public involvement
Patient engagement
Patient participation
Journal
Research involvement and engagement
ISSN: 2056-7529
Titre abrégé: Res Involv Engagem
Pays: England
ID NLM: 101708164
Informations de publication
Date de publication:
11 Jun 2024
11 Jun 2024
Historique:
received:
29
01
2024
accepted:
06
06
2024
medline:
12
6
2024
pubmed:
12
6
2024
entrez:
11
6
2024
Statut:
epublish
Résumé
Patient and public involvement (PPI) has become an essential part of health research. There is a need for genuine involvement in order to ensure that research is relevant to patients. This can then improve the quality, relevance, and impact of health research, while at the same time reducing wasted research and in doing so bringing science and society closer together. Despite the increasing attention for this involvement, it is not yet common practice to report on proposed activities. An article reporting planned PPI could provide guidance and inspiration for the wider academic community in future activities. Therefore, this current article aims to describe the way in which PPI principles are incorporated in the research project called "Quality of Life in Oncology: measuring what matters for cancer patients and survivors in Europe (EUonQoL)." This project aims to develop a new set of questionnaires to enable cancer patients to assess their quality of life, entitled the EUonQoL-Kit. The first step is to recruit cancer patients and their informal caregivers as co-researchers in order to train them to collaborate with the researchers. Based on their skills and preferences, they are then assigned to several of the project's work packages. Their individual roles, tasks, and responsibilities regarding the work packages, to which they have been assigned, are evaluated and adapted when necessary. The impact of their involvement is evaluated by both the researchers and co-researchers. PPI is a complex and dynamic process. As such, the overall structure of the research may be defined while at the same time leaving room for certain aspects to be filled in later. Our research is, we believe, relevant as co-researcher involvement in such a large European project as EUonQoL is a new development.
Sections du résumé
BACKGROUND
BACKGROUND
Patient and public involvement (PPI) has become an essential part of health research. There is a need for genuine involvement in order to ensure that research is relevant to patients. This can then improve the quality, relevance, and impact of health research, while at the same time reducing wasted research and in doing so bringing science and society closer together. Despite the increasing attention for this involvement, it is not yet common practice to report on proposed activities. An article reporting planned PPI could provide guidance and inspiration for the wider academic community in future activities. Therefore, this current article aims to describe the way in which PPI principles are incorporated in the research project called "Quality of Life in Oncology: measuring what matters for cancer patients and survivors in Europe (EUonQoL)." This project aims to develop a new set of questionnaires to enable cancer patients to assess their quality of life, entitled the EUonQoL-Kit.
METHODS
METHODS
The first step is to recruit cancer patients and their informal caregivers as co-researchers in order to train them to collaborate with the researchers. Based on their skills and preferences, they are then assigned to several of the project's work packages. Their individual roles, tasks, and responsibilities regarding the work packages, to which they have been assigned, are evaluated and adapted when necessary. The impact of their involvement is evaluated by both the researchers and co-researchers.
DISCUSSION
CONCLUSIONS
PPI is a complex and dynamic process. As such, the overall structure of the research may be defined while at the same time leaving room for certain aspects to be filled in later. Our research is, we believe, relevant as co-researcher involvement in such a large European project as EUonQoL is a new development.
Identifiants
pubmed: 38863075
doi: 10.1186/s40900-024-00597-9
pii: 10.1186/s40900-024-00597-9
doi:
Types de publication
Journal Article
Review
Langues
eng
Pagination
59Subventions
Organisme : European Health and Digital Executive Agency
ID : 101096362
Organisme : European Health and Digital Executive Agency
ID : 101096362
Organisme : European Health and Digital Executive Agency
ID : 101096362
Organisme : European Health and Digital Executive Agency
ID : 101096362
Organisme : European Health and Digital Executive Agency
ID : 101096362
Organisme : European Health and Digital Executive Agency
ID : 101096362
Organisme : European Health and Digital Executive Agency
ID : 101096362
Organisme : European Health and Digital Executive Agency
ID : 101096362
Organisme : European Health and Digital Executive Agency
ID : 101096362
Organisme : European Health and Digital Executive Agency
ID : 101096362
Organisme : European Health and Digital Executive Agency
ID : 101096362
Organisme : European Health and Digital Executive Agency
ID : 101096362
Organisme : European Health and Digital Executive Agency
ID : 101096362
Organisme : European Health and Digital Executive Agency
ID : 101096362
Organisme : European Health and Digital Executive Agency
ID : 101096362
Organisme : European Health and Digital Executive Agency
ID : 101096362
Organisme : European Health and Digital Executive Agency
ID : 101096362
Organisme : European Health and Digital Executive Agency
ID : 101096362
Informations de copyright
© 2024. The Author(s).
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