On 15 January, the PROMINENT project convened a first meeting of its Public Involvement Board. This advisory board, which is organised and moderated by the Alzheimer Europe Public Involvement team, comprises people with mild cognitive impairment or dementia, carers, as well as older adults with an interest in brain health. The PROMINENT Public Involvement Board (PIB) was created to ensure that the needs, perspectives and preferences of people with dementia and carers are reflected in PROMINENT activities. It is a forum for collaboration and partnership between PROMINENT researchers and some of the most important end users of the PROMINENT platform: patients and carers.
PROMINENT aims to improve the management of Alzheimer’s disease (AD), by developing, evaluating and validating a digital platform for personalised prediction, diagnosis and treatment of AD. The project, which is funded by the Innovative Health Initiative for a period of five years, will create a digital system to provide memory clinic doctors with evidence-based recommendations and individualised clinical decision support. Patients will receive informational materials and reports designed to support their engagement in the clinical decision-making process. Close involvement of people with dementia or MCI and carers in the development and evaluation of the PROMINENT system is key, to maximise the value, accessibility and utility for end users.
The PIB consultation on 15 January was focused on the PROMINENT clinical evaluation study, which will obtain feedback from clinicians, patients and carers about the utilisation of the platform. In the consultation, which was moderated by Daphné Lamirel (Public Involvement Officer at Alzheimer Europe) and Lena Sannemann (clinical researcher at the University of Cologne), PIB members shared their views on the design of the evaluation study. An important topic was when and how to gather feedback from patients and carers in the evaluation study, with discussions identifying preferences for interviews, focus groups and surveys. PIB members also discussed the types of questions that could be asked during the evaluation study, highlighting areas that are particularly meaningful for patients and carers. A follow-up meeting is planned for February.
