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
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 redu...
| Autores: | , , , , , , , , , , , , , , , , , , |
|---|---|
| Formato: | artículo |
| Estado: | Versión publicada |
| Fecha de publicación: | 2024 |
| País: | España |
| Recursos: | Universitat Pompeu Fabra |
| Repositorio: | Repositorio Digital de la UPF |
| OAI Identifier: | oai:repositori.upf.edu:10230/70927 |
| Acesso em linha: | http://hdl.handle.net/10230/70927 http://dx.doi.org/10.1186/s40900-024-00597-9 |
| Access Level: | acceso abierto |
| Palavra-chave: | Co-researchers Oncology Patient and public involvement Patient engagement Patient participation |
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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 |
| title |
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 |
| spellingShingle |
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 Engelaar, Merel Co-researchers Oncology Patient and public involvement Patient engagement Patient participation |
| title_short |
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 |
| title_full |
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 |
| title_fullStr |
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 |
| title_full_unstemmed |
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 |
| title_sort |
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 |
| dc.creator.none.fl_str_mv |
Engelaar, Merel Bos, Nanne van Schelven, Femke Lorenzo i Sunyer, Nora Couespel, Norbert Apolone, Giovanni Brunelli, Cinzia Caraceni, Augusto Ferrer Forés, Maria Montserrat Groenvold, Mogens Kaasa, Stein Ciliberto, Gennaro Lombardo, Claudio Pietrobon, Ricardo Pravettoni, Gabriella Sirven, Aude Vachon, Hugo Gilbert, Alexandra Rademakers, Jany |
| author |
Engelaar, Merel |
| author_facet |
Engelaar, Merel Bos, Nanne van Schelven, Femke Lorenzo i Sunyer, Nora Couespel, Norbert Apolone, Giovanni Brunelli, Cinzia Caraceni, Augusto Ferrer Forés, Maria Montserrat Groenvold, Mogens Kaasa, Stein Ciliberto, Gennaro Lombardo, Claudio Pietrobon, Ricardo Pravettoni, Gabriella Sirven, Aude Vachon, Hugo Gilbert, Alexandra Rademakers, Jany |
| author_role |
author |
| author2 |
Bos, Nanne van Schelven, Femke Lorenzo i Sunyer, Nora Couespel, Norbert Apolone, Giovanni Brunelli, Cinzia Caraceni, Augusto Ferrer Forés, Maria Montserrat Groenvold, Mogens Kaasa, Stein Ciliberto, Gennaro Lombardo, Claudio Pietrobon, Ricardo Pravettoni, Gabriella Sirven, Aude Vachon, Hugo Gilbert, Alexandra Rademakers, Jany |
| author2_role |
author author author author author author author author author author author author author author author author author author |
| dc.subject.none.fl_str_mv |
Co-researchers Oncology Patient and public involvement Patient engagement Patient participation |
| topic |
Co-researchers Oncology Patient and public involvement Patient engagement Patient participation |
| description |
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: 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: 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. |
| publishDate |
2024 |
| dc.date.none.fl_str_mv |
2024 2025 2025 |
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info:eu-repo/semantics/article info:eu-repo/semantics/publishedVersion |
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article |
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publishedVersion |
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http://hdl.handle.net/10230/70927 http://dx.doi.org/10.1186/s40900-024-00597-9 |
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http://hdl.handle.net/10230/70927 http://dx.doi.org/10.1186/s40900-024-00597-9 |
| dc.language.none.fl_str_mv |
Inglés |
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Inglés |
| dc.relation.none.fl_str_mv |
Res Involv Engagem. 2024 Jun 11;10(1):59 info:eu-repo/grantAgreement/EC/HE/101096362 |
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http://creativecommons.org/licenses/by/4.0/ info:eu-repo/semantics/openAccess |
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http://creativecommons.org/licenses/by/4.0/ |
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openAccess |
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application/pdf application/pdf |
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BioMed Central |
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BioMed Central |
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reponame:Repositorio Digital de la UPF instname:Universitat Pompeu Fabra |
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Universitat Pompeu Fabra |
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Repositorio Digital de la UPF |
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Repositorio Digital de la UPF |
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1869415665832558592 |
| spelling |
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 projectEngelaar, MerelBos, Nannevan Schelven, FemkeLorenzo i Sunyer, NoraCouespel, NorbertApolone, GiovanniBrunelli, CinziaCaraceni, AugustoFerrer Forés, Maria MontserratGroenvold, MogensKaasa, SteinCiliberto, GennaroLombardo, ClaudioPietrobon, RicardoPravettoni, GabriellaSirven, AudeVachon, HugoGilbert, AlexandraRademakers, JanyCo-researchersOncologyPatient and public involvementPatient engagementPatient participationBackground: 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: 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: 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.The wider research project, “Quality of Life in Oncology: measuring what matters for cancer patients and survivors in Europe” (EUonQoL), in which these Patient and Public Involvement (PPI) activities are embedded, has received funding from the European Union’s Research and Innovation Programme HORIZON-MISS-2021-CANCER-02 under Grant Agreement No 101096362 Project EUonQoL. The views and opinions expressed are however those of the authors only and do not necessarily reflect those of the European Union or European Health and Digital Executive Agency (HADEA). Neither the European Union nor the granting authority can be held responsible for them.BioMed Central202520252024info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionapplication/pdfapplication/pdfhttp://hdl.handle.net/10230/70927http://dx.doi.org/10.1186/s40900-024-00597-9reponame:Repositorio Digital de la UPFinstname:Universitat Pompeu FabraInglésRes Involv Engagem. 2024 Jun 11;10(1):59info:eu-repo/grantAgreement/EC/HE/101096362© The Author(s) 2024. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.http://creativecommons.org/licenses/by/4.0/info:eu-repo/semantics/openAccessoai:repositori.upf.edu:10230/709272026-06-12T07:21:37Z |
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15,812429 |