Alzheimer Schweiz supports Alzheimer Europe’s launch of a public opinion poll examining attitudes towards dementia research participation and data sharing
Representation is essential for research outcomes to be applicable to the populations they aim to benefit. However, only a small and rather selective group of people tends to participate, which may limit the broader impact of the findings. Therefore, identifying the factors which influence people’s willingness to take part in dementia research is crucial for making meaningful recommendations to promote participation. Sharing of data between researchers and organisations can maximise the use and value of research data, leading to new findings. Due to the lack of European perspectives on both dementia research participation and data sharing, Alzheimer Europe has launched a public opinion poll to explore and assess attitudes towards both these topics.
This public opinion poll is part of a broader initiative, which aims to understand motivators and barriers to dementia research participation and data sharing. The project builds on a previous initiative also led by Alzheimer Europe, mapping European data sharing practices in the dementia field. Developed in collaboration with Alzheimer Europe member organisations, the European Working Group of People with Dementia, and the European Dementia Carers Working Group, the poll aims to gather information on barriers and facilitators for participation in future dementia research, past experiences with research, and attitudes towards data sharing.
Through this work, Alzheimer Europe will map and compare factors influencing dementia research participation across European countries, identifying potential predictors of future recruitment across research areas. The results will contribute to a report and a set of recommendations intending to increase participation and data sharing and will also be published in a dedicated section of the Alzheimer Europe website.
The poll takes approximately 10 minutes to complete and is open to anyone living in a European country. No prior experience participating in dementia research is required and both people with and without dementia can participate.