Involving people with dementia (PwD) and their care partners, as well as the public, is a crucial aspect of conducting meaningful research. The goal of this Work Package (WP) has been to establish a ‘Research User Group’ (RUG) of lay members to support, inform and guide the entire SENSE-Cog research programme and ensure that we are meeting the needs of PwD and their care partners. To do this, with our partner sites across the EU, we have established a network of RUGs, each comprised of 7-10 people living with cognitive ill-health and/or hearing/vision impairment and their friends and family. The groups have trained in the principles of research to equip them to give meaningful advice about the running of the SENSE-cog research programme. The groups meet regularly to support the SENSE-cog researchers regarding a multitude of aspects of the research, including the appropriateness of the study materials, which research questions to focus on, how research participants should be recruited for the study, the acceptability and tolerability of the chosen outcome measures, the clinical meaningfulness of results, and how to tell people about the results of the research. A public website has been developed, and twitter and linkedin social media accounts have been set up. We have held several public engagement events in Nice and Manchester to share with members of the public the results of the research so far.
Results and potential impact
Involving people who have experienced cognitive and/or sensory impairments in the research and effectively communicating the results of the research has been a key aim of the SENSE-Cog Work Package 5 programme. To date, we have had successful public engagement events with over 250 people and have shared our results in various ways, including our website, through social media, and through interviews and lay articles. Our activities with our lay members have spread the principles and methods of ‘patient and public involvement’ (PPI) to all our partner countries. This ensures that there is public ownership of health research and that the research outputs are used appropriately and effectively. Our PPI work is building on prior models for public involvement in health research in: (1) establishing a model for cross-European public involvement in health research; (2) establishing training and support structures for public involvement in health research; and (3) quantifying the impacts and benefits of public involvement in the SENSE-cog study to promote mental well-being in elderly Europeans. Finally, we are also involved in formally evaluating our methods of lay engagement to ensure that the SENSE-cog project will provide a gold standard model for public involvement in health research in Europe.
The outcomes of this part of the SENSE-Cog programme are relevant to clinicians, older adults, people with sensory and cognitive impairments, NGOs, industry and government policy-makers. To ensure maximum impact and use of results, relevant stake holders are included in a steering committee with input to development, running, analysis, interpretation, dissemination and engagement activities. This project has established an EU of patient are carer representatives, and will produce a training package for development of EU research user groups.