TY - JOUR
T1 - Insights on conducting digital patient and public involvement in dementia research during the COVID-19 pandemic
T2 - supporting the development of an “E-nabling digital co-production” framework
AU - Molinari-Ulate, Mauricio
AU - Woodcock, Rebecca
AU - Smith, Isabelle
AU - van der Roest, Henriëtte G.
AU - Franco-Martín, Manuel A.
AU - Craven, Michael P.
N1 - Funding Information: Special thanks are due to the members of the MindTech Involvement Team who were engaged during the different stages of the project, to the group of researchers, coordinators, and contributors with experience in dementia research, and the University of Nottingham Dementia, Frail Older and Palliative Care, Patient and Public Involvement Advisory Group which supports a wide range of research projects undertaken in the Faculty of Medicine and Health Sciences. Funding Information: This project has received funding from the European Union’s Horizon 2020, as part of the Marie Skłodowska Curie Actions—Innovative Training Network, H2020-MSCA-ITN (under grant agreement number 813196). The work was supported by the NIHR MindTech MedTech Co-operative and NIHR Nottingham Biomedical Research Centre. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR, or the Department of Health and Social Care. Publisher Copyright: © 2022, The Author(s).
PY - 2022/12/1
Y1 - 2022/12/1
N2 - 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.
AB - 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.
KW - COVID-19
KW - Co-production
KW - Dementia
KW - Dementia research
KW - PPI
KW - Patient and public involvement
UR - http://www.scopus.com/inward/record.url?scp=85135089772&partnerID=8YFLogxK
U2 - https://doi.org/10.1186/s40900-022-00371-9
DO - https://doi.org/10.1186/s40900-022-00371-9
M3 - Article
C2 - 35883132
SN - 2056-7529
VL - 8
JO - Research involvement and engagement
JF - Research involvement and engagement
IS - 1
M1 - 33
ER -