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.

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.

The COVID-19 pandemic has impacted the engagement of patients and the public in research. Lockdowns, social distancing, and reduced physical contact have affected the involvement of public contributors in research studies. In particular, the pandemic triggered a rapid transition to digital working, increasing the use of Information and Communication Technologies such as video conferencing on computers and mobile devices. With little time to reflect on the consequences of digital working in PPI and with a continuing legacy of hybrid or blended approaches to involvement, this project highlights the challenges and potential for e-PPI approaches (electronic/digital PPI) within the context of dementia research. In addition to examining the transition to digital working in this area, we present a co-produced framework for researchers, PPI coordinators and public contributors.

Together We Make the Difference: National Strategy for Recruitment and Participation in Alzheimer's and Related Dementias Clinical Research.

The National Alzheimer's Project Act identifies the effective treatment and prevention of Alzheimer's by 2025 as an urgent public health mission. This priority is reflected in the recent increases in public funding that is accelerating Alzheimer's and related dementias research. Many drugs and clinical interventions are in rapid development, with the promising ones moving to clinical trials to be tested. There are currently more than 200 on-going clinical trials, seeking more than 270,000 participants, which will require screening of more than a million individuals. With the race to treatment, how inclusive will screenings be to ensure diversification of the citizens volunteering to become trial participants? Underrepresented groups are chronically under-enrolled in clinical research studies. This under-enrollment leads to conclusions about disease risk factors and processes without all the necessary data because the studies are not representative of all people and all life experiences.