The PROMINENT Public Involvement Board meets online for a consultation about the project’s clinical studies and participant facing material


On 29 May, the members of the PROMINENT Public Involvement Board (PIB) met online. They were joined by Dianne Gove (Director for Public Involvement and Ethics at Alzheimer Europe), Sarah Campill (Public Involvement Officer at Alzheimer Europe), Daphné Lamirel (Public Involvement Officer at Alzheimer Europe) and Lena Sannemann (University Hospital of Cologne). The meeting began with a presentation by Lena about the validation study of the PROMINENT project. This study aims to test the Clinician Decision Support System (CDSS), examining, for instance, its accuracy, its impact on clinicians’ confidence, and its potential to save time and financial resources. Daphné then explained the purpose of a participant information sheet and an informed consent form in the context of clinical studies. In smaller group discussions, facilitated by Dianne, Lena and Daphné, the members provided feedback on the participation information and informed consent form that participants of the PROMINENT validation study will receive. 

They discussed how to make the document more understandable, and respectful and inclusive towards people with cognitive problems and their supporters/carers. They also gave feedback on whether any crucial information was missing from the draft document. The second half of the consultation focused on gathering input on the design of the validation study. PIB members were asked to comment on potential outcome measures for the study, including which outcomes were seen as essential and which were merely interesting. A final discussion centred on the possible combination of participant-facing materials for both the validation study and another clinical study planned in PROMINENT, weighing the pros and cons. Overall, the conversations were highly engaging, with all members actively contributing and sharing valuable feedback on the participant-facing material and design of the PROMINENT study. This feedback will help clinical partners in PROMINENT plan the clinical studies and finalise the participant-facing material.