On 26 June, ROADMAP partners held two interactive feedback sessions with the members of the European Working Group of People With Dementia (EWGPWD). The sessions are a follow-up of the consultations with the Outcome Definition and  Ethics (ELSI) teams.

Following up from the first consultation, held in September, the Outcome Definition team discussed insights from the members’ own lived experiences, which they applied to the interpretation of survey results. The key idea of the work revolved around understanding the experience of having dementia and how people understand whether or not their disease is progressing. The members of the EWGPWD had the opportunity to feed back on these interpretations to help the team ensure that the interpretations reflect the meaning of what the group had said. If you are interested in learning more about this consultation, you can read about the methodology here.

The second part of the feedback session focussed on the other consultation, held in December, where the group met with the ELSI team (Ethical, Legal and Social Implication) to understand patient and carer attitudes towards the ethical, legal and social implications of a real-world data platform for Alzheimer’s disease.

Commenting on sessions, Dianne Gove, Director for Projects from Alzheimer Europe said; “The value I see as part of these sessions is that it wasn’t just that the researchers checked with the group that their interpretations were correct, but also that they ensured that the group is informed about what happens to the results and how these will come together. It is a way of valuing their contribution and showing respect for their involvement in these activities.”

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