Insights on conducting digital patient and public involvement in dementia research during the COVID-19 pandemic: supporting the development of an “E-nabling digital co-production” framework
[EN]Background: The rapid transition to digital working, accelerated due to the response to the COVID-19 pandemic, has impacted the involvement of patients and public in research. This paper presents experiences of engaging in digital Patient and Public Involvement (e-PPI) in dementia research since...
| Autores: | , , , , , |
|---|---|
| Tipo de recurso: | artículo |
| Estado: | Versión aceptada para publicación |
| Fecha de publicación: | 2022 |
| País: | España |
| Institución: | Universidad de Salamanca (USAL) |
| Repositorio: | GREDOS. Repositorio Institucional de la Universidad de Salamanca |
| OAI Identifier: | oai:gredos.usal.es:10366/166788 |
| Acceso en línea: | http://hdl.handle.net/10366/166788 |
| Access Level: | acceso abierto |
| Palabra clave: | COVID-19 Co-production Dementia Dementia research PPI Patient and public involvement |
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Insights on conducting digital patient and public involvement in dementia research during the COVID-19 pandemic: supporting the development of an “E-nabling digital co-production” frameworkMolinari Ulate, MauricioWoodcock, RebeccaSmith, IsabelleVan der Roest, HenriëtteFranco Martín, Manuel ÁngelCraven, Michael P.COVID-19Co-productionDementiaDementia researchPPIPatient and public involvement[EN]Background: The rapid transition to digital working, accelerated due to the response to the COVID-19 pandemic, has impacted the involvement of patients and public in research. This paper presents experiences of engaging in digital Patient and Public Involvement (e-PPI) in dementia research since the lockdowns, offering recommendations regarding future digital and hybrid working. Furthermore, it introduces a co-produced framework for researchers, PPI coordinators and public contributors to identify and discuss challenges and opportunities provided by e-PPI. Methods: Two online workshops and one individual interview were performed with a group of researchers and PPI coordinators with experience in PPI in dementia research, and with an existing dementia PPI group having some experience of working online during the pandemic. The project was constructed as a PPI activity, with the MindTech Involvement Team (PPI group) involved in the entire process, and a collaborative data analysis process was adopted. Results: After refinement of the coding structure, the MindTech Involvement Team and Project Leaders identified four main themes, resulting in the 'E-nabling Digital Co-production' Framework. During this framework development, different positions were expressed, associated with the transition to digital working. Two main themes were shared by the participating groups regarding e-PPI: wider potential reach without geographical constraints, and the perception of more business-like sessions with reduced opportunities for social interactions and communication. Specifically for dementia research, whilst e-PPI may allow public contributors to attend more meetings, potentially mutually supportive environments provided by face-to-face meetings could be diminished, with carers experiencing a possible reduction in informal respite opportunities. Conclusions: Through involving public contributors, researchers, and PPI coordinators with a focus on digital PPI in dementia research, we were able to further refine and co-produce the 'E-nabling Digital Co-production' Framework. Demonstrating potential for analysis of benefits and limitations within e-PPI, it was possible to identify both general insights and those specific to dementia research. However, the most significant contribution of the framework is the potential to support local journeys of co-production in ongoing digital and hybrid public involvement activitiesBioMed Central202520252022info:eu-repo/semantics/articleinfo:eu-repo/semantics/acceptedVersionhttp://hdl.handle.net/10366/166788reponame:GREDOS. Repositorio Institucional de la Universidad de Salamancainstname:Universidad de Salamanca (USAL)InglésAttribution-NonCommercial-NoDerivatives 4.0 InternacionalAttribution-NonCommercial-NoDerivatives 4.0 Internacionalhttp://creativecommons.org/licenses/by-nc-nd/4.0/info:eu-repo/semantics/openAccessoai:gredos.usal.es:10366/1667882026-06-07T06:28:51Z |
| dc.title.none.fl_str_mv |
Insights on conducting digital patient and public involvement in dementia research during the COVID-19 pandemic: supporting the development of an “E-nabling digital co-production” framework |
| title |
Insights on conducting digital patient and public involvement in dementia research during the COVID-19 pandemic: supporting the development of an “E-nabling digital co-production” framework |
| spellingShingle |
Insights on conducting digital patient and public involvement in dementia research during the COVID-19 pandemic: supporting the development of an “E-nabling digital co-production” framework Molinari Ulate, Mauricio COVID-19 Co-production Dementia Dementia research PPI Patient and public involvement |
| title_short |
Insights on conducting digital patient and public involvement in dementia research during the COVID-19 pandemic: supporting the development of an “E-nabling digital co-production” framework |
| title_full |
Insights on conducting digital patient and public involvement in dementia research during the COVID-19 pandemic: supporting the development of an “E-nabling digital co-production” framework |
| title_fullStr |
Insights on conducting digital patient and public involvement in dementia research during the COVID-19 pandemic: supporting the development of an “E-nabling digital co-production” framework |
| title_full_unstemmed |
Insights on conducting digital patient and public involvement in dementia research during the COVID-19 pandemic: supporting the development of an “E-nabling digital co-production” framework |
| title_sort |
Insights on conducting digital patient and public involvement in dementia research during the COVID-19 pandemic: supporting the development of an “E-nabling digital co-production” framework |
| dc.creator.none.fl_str_mv |
Molinari Ulate, Mauricio Woodcock, Rebecca Smith, Isabelle Van der Roest, Henriëtte Franco Martín, Manuel Ángel Craven, Michael P. |
| author |
Molinari Ulate, Mauricio |
| author_facet |
Molinari Ulate, Mauricio Woodcock, Rebecca Smith, Isabelle Van der Roest, Henriëtte Franco Martín, Manuel Ángel Craven, Michael P. |
| author_role |
author |
| author2 |
Woodcock, Rebecca Smith, Isabelle Van der Roest, Henriëtte Franco Martín, Manuel Ángel Craven, Michael P. |
| author2_role |
author author author author author |
| dc.subject.none.fl_str_mv |
COVID-19 Co-production Dementia Dementia research PPI Patient and public involvement |
| topic |
COVID-19 Co-production Dementia Dementia research PPI Patient and public involvement |
| description |
[EN]Background: The rapid transition to digital working, accelerated due to the response to the COVID-19 pandemic, has impacted the involvement of patients and public in research. This paper presents experiences of engaging in digital Patient and Public Involvement (e-PPI) in dementia research since the lockdowns, offering recommendations regarding future digital and hybrid working. Furthermore, it introduces a co-produced framework for researchers, PPI coordinators and public contributors to identify and discuss challenges and opportunities provided by e-PPI. Methods: Two online workshops and one individual interview were performed with a group of researchers and PPI coordinators with experience in PPI in dementia research, and with an existing dementia PPI group having some experience of working online during the pandemic. The project was constructed as a PPI activity, with the MindTech Involvement Team (PPI group) involved in the entire process, and a collaborative data analysis process was adopted. Results: After refinement of the coding structure, the MindTech Involvement Team and Project Leaders identified four main themes, resulting in the 'E-nabling Digital Co-production' Framework. During this framework development, different positions were expressed, associated with the transition to digital working. Two main themes were shared by the participating groups regarding e-PPI: wider potential reach without geographical constraints, and the perception of more business-like sessions with reduced opportunities for social interactions and communication. Specifically for dementia research, whilst e-PPI may allow public contributors to attend more meetings, potentially mutually supportive environments provided by face-to-face meetings could be diminished, with carers experiencing a possible reduction in informal respite opportunities. Conclusions: Through involving public contributors, researchers, and PPI coordinators with a focus on digital PPI in dementia research, we were able to further refine and co-produce the 'E-nabling Digital Co-production' Framework. Demonstrating potential for analysis of benefits and limitations within e-PPI, it was possible to identify both general insights and those specific to dementia research. However, the most significant contribution of the framework is the potential to support local journeys of co-production in ongoing digital and hybrid public involvement activities |
| publishDate |
2022 |
| dc.date.none.fl_str_mv |
2022 2025 2025 |
| dc.type.none.fl_str_mv |
info:eu-repo/semantics/article info:eu-repo/semantics/acceptedVersion |
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article |
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acceptedVersion |
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http://hdl.handle.net/10366/166788 |
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http://hdl.handle.net/10366/166788 |
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Inglés |
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Inglés |
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Attribution-NonCommercial-NoDerivatives 4.0 Internacional Attribution-NonCommercial-NoDerivatives 4.0 Internacional http://creativecommons.org/licenses/by-nc-nd/4.0/ info:eu-repo/semantics/openAccess |
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Attribution-NonCommercial-NoDerivatives 4.0 Internacional http://creativecommons.org/licenses/by-nc-nd/4.0/ |
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openAccess |
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BioMed Central |
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BioMed Central |
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reponame:GREDOS. Repositorio Institucional de la Universidad de Salamanca instname:Universidad de Salamanca (USAL) |
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Universidad de Salamanca (USAL) |
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GREDOS. Repositorio Institucional de la Universidad de Salamanca |
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GREDOS. Repositorio Institucional de la Universidad de Salamanca |
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