ArticleResearch involvement and engagement2022
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.
Article in Research involvement and engagement, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Who cites it
10 citing papers in PubMed, 12 citations in OpenAlex.
- Family Carer Involvement in Dementia Care Research: A Scoping Review and Expert Consultation.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Meta-Research on the Science of Lived Experience Engagement in Mental Health and Substance Use Health Research: A Scoping Review and Qualitative Synthesis.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Participatory development of patient-targeted guideline material in palliative care: A qualitative evaluation.Palliative care and social practice · 2026Article
- Experience, Process, and Impact of Involving Informal Caregivers of People With Dementia as Public Contributors to Inform the Development of a Complex Intervention: A Mixed-Methods Study.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Understanding and guiding technology use in dementia: a pan-European mapping and consensus study.Frontiers in dementia · 2025Article
- Determinants of Successful Implementation of Assistive Technologies for Dementia: Exploratory Survey.JMIR aging · 2024Article
- The Perspective of Nurses and Healthcare Providers on the use of Television Videos with People with Moderate to Severe Dementia.The Canadian journal of nursing research = Revue canadienne de recherche en sciences infirmieres · 2024Article
- Sustaining connections: feasibility and impact of long-term virtual patient engagement.Research involvement and engagement · 2024Article
- Meaningful patient and public engagement in dissemination-embedding co-production in dementia research.Frontiers in dementia · 2024Article
- Adapting Patient and Public Involvement processes in response to the Covid-19 pandemic.Health expectations : an international journal of public participation in health care and health policy · 2023Article
Corrections and comments
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Authors and funding
6 authors at 5 institutions in 3 countries.
Funding
Abstract
backgroundThe 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.
methodsTwo 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.
resultsAfter 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.
conclusionsThrough 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.
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.