On 31 January, Lena Sannemann and Jyrki Lötjönen from the PROMINENT project, and Sebastien Libert from Alzheimer Europe held on online consultation with the project’s Public Involvement Board (PIB) to support the development of patient reports for people diagnosed with dementia. Members of the PIB included two relatives of a person with dementia and one carer. The goal of this consultation was to improve the quality, accessibility and ethical aspects of patient reports providing results to patients following clinical tests to assess their cognitive capacities. The consultation was an enriching experience involving constructive discussions between PIB members and the representatives from PROMINENT. During this consultation, the PIB members were invited to share their perspective on the draft patient reports, focusing on communication about diagnoses and suggested therapies, and their appropriateness for patients.
Some of the points discussed also included improving the clarity of diagrams used to communicate the cognitive state of patients. As a result of this consultation, researchers from the PROMINENT project will be able to refine these patient reports. Comments from the PIB members will also contribute to improving the capacity of European memory clinics and healthcare facilities to provide sensitive information to patients about their cognition in an ethical manner which protects their wellbeing. Outcomes of this consultation will also contribute to the general objectives of the PROMINENT project to set up a digital platform to improve the diagnosis and personalised treatment of people with Alzheimer’s disease coupled with other diseases. For more information about the PROMINENT project, visit: https://www.ihi-prominent.eu/
