Public Involvement in Dementia Care & Research

We understand Public Involvement (PI) as conducting research with or by members of the public rather than for, to or about them. In addition to PI, other approaches have been developed to involve members of the public, amongst others, in research such as participatory research. This research topic aims to advance empirical, methodological and conceptual knowledge on involving members of the public in dementia research. We invite contributions that strengthen how PI, citizen science, user-driven development and participatory research can be designed, implemented, evaluated and reported in ways that meaningfully influence research priorities, study design, conduct, interpretation and dissemination. A central goal is to move beyond treating people with lived experience as study participants only, and instead to support their roles as advisors, co-designers and co-researchers across research stages. Submissions should help build clearer models, methods, infrastructures and measurement approaches, and provide critical reflection on what enables impactful and meaningful involvement, what barriers persist and how equity, diversity, and ethical considerations can be addressed in dementia research.The involvement of members of the public in this way improves the research process and outcomes and is also linked to democracy (e.g. democratic decision making, public accountability, legitimisation and transparency), people having rights (e.g. a right to voice, a right to be involved in research relevant to one’s own condition) and to ethical principles of justice and fairness. Members of the public typically include people with or at risk of dementia and carers/relatives/significant others (often referred to as experts by experience) and not healthcare professionals, researchers, policy makers or service providers. They collaborate closely with researchers to help shape research questions, improve study procedures, inform recruitment and retention strategies, strengthen interpretation of findings and dissemination. However, they are often badly or inconsistently defined and reported or inadequately supported by appropriate methods, resources and processes. There is a need for clearer concepts, robust methods and transparent reporting, and reflection on barriers and facilitators, challenges, limitations and impact. This Topic provides a dedicated space for strengthening evidence and practice in relation to these different approaches used to involve members of the public in dementia research.We welcome manuscripts on dementia research that apply and/or advance one or more of the following: PI; citizen science; user-driven development or co-design of technologies/tools/ services; participatory research; co-research; models, frameworks and methodologies of involvement; understanding the impact of involving members of the public in dementia research; and work addressing ethics, equity, diversity and policy. Eligible submissions must clearly define the roles of members of the public (e.g. people with or at risk of dementia and/or carers) as contributors and not as study participants, describe the methods and infrastructures supporting these roles (e.g. panels, advisory groups, focus groups discussion, co-design workshops, citizen science platforms and participatory analysis), and include reflection on their influence across research steps. We encourage original research, methods papers and conceptual contributions. Topic editors: Martina Roes, Ana Diaz, Lillian Hung, Dianne Gove Source: https://www.frontiersin.org/research-topics/78510/public-involvement-in-dementia-care-research