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Alzheimer Europe co-hosts European Parliament Workshop on “Digital data for dementia research and innovation”

Tuesday 23 February 2021

On 23 February, Alzheimer Europe co-hosted an online European Parliament workshop with Charité – Universitätsmedizin Berlin, entitled “Digital data for dementia research and innovation”. Chaired by Deirdre Clune MEP (Ireland), Vice-Chairperson of the European Alzheimer’s Alliance (EAA), the workshop featured presentations from speakers working in the field of dementia, at Alzheimer Europe and for the European Commission.

The event was attended by EU policymakers, representatives from national Alzheimer’s associations, national health ministries, pharmaceutical companies, researchers and members of the European Working Group of People with Dementia

The meeting was also attended by EAA Chairperson, Sirpa Pietikäinen MEP (Finland), and EAA member Tsvetelina Penkova MEP (Bulgaria). Additionally, Isabel García Muñoz MEP (Spain) attended the meeting, as did representatives from the offices of Martin Brglez MEP (Slovenia) and Hilde Vautmans MEP (Belgium).

Petra Ritter, BIH Johanna Quandt Professor for Brain Simulation at Charité – Universitätsmedizin Berlin and leader of the Virtual Brain Cloud project, outlined the project’s goal of developing personalised prevention and treatment for dementia, supporting this through the integration of data from large cohorts of patients and healthy controls to create a multi-scale brain simulation. As part of this outline, the technical and legal challenges in relation to the use and sharing of personal data in brain simulations were explained to attendees.

Paweł Świeboda, Director General of the Human Brain Project and CEO for EBRAINS, introduced these two programmes of work, outlining how they were addressing the challenges in infrastructure and interoperability related to the sharing of data in brain health research, as well as addressing issues of collaboration and scale. Looking towards the forthcoming work of the EU in relation to a European Health Data Space, it was suggested that there is a strong case to be made for a dedicated Brain Health Data Space embedded within this work.

Tetsuyuki Maruyama,Executive Director, Alzheimer’s Disease Data Initiative (ADDI), introduced the ADDI and ADDI’s AD Workbench, explaining that both the organisation and initiative are relatively are early in their development. It was explained that ADDI’s aims include developing a data sharing platform and associated data science tools to provide researchers with access to data from dementia research, as well as connecting data globally to allow access for researchers working in the dementia field. Launched in November, the AD Workbench aims to increase data sharing and support the development of new tools and analytics for researchers, with over 700 users globally using the platform so far.

Angela Bradshaw, Project Officer, Alzheimer Europe, launched Alzheimer Europe’s new report “Data Sharing in dementia research – the EU landscape”, which outlines the legal and policy context that dementia researchers working in the field must navigate. The report identifies that whilst open access and data sharing is widely agreed upon in principle, practices vary widely between sectors and Member States, with the General Data Protection Regulation (GDPR) also not fully delivering on its aim of facilitating research data sharing. Key recommendations within the report include the development of pathways for faster, secure sharing of research data between sectors and across borders, support for researchers to maintain datasets and platforms after projects end, and embedding academic reward systems that place a greater value on data sharing and transparency.

Saila Rinne,Head of Sector for policy, Unit H.3 eHealth, Wellbeing and Ageing,DG CONNECT, provided a focus on some of the different work being undertaken by the European Commission in relation to digital health and ageing. Much of this work is built around three points: secure access and exchange of health data; health data pooled for research and personalised medicine; and, digital tools and data for citizen empowerment. In addition, to projects and work which has been undertaken so far in relation to digital health and ageing, future workstreams with relevance for better sharing and use of data for health research were highlighted, including Horizon Europe, EU4Health and the Digital Europe programmes.

Concluding the Workshop, Iva Holmerovà, Chairperson of Alzheimer Europe, noted the importance of data, highlighting that the process of meta-analysis in research, beginning with the Cochrane process in clinical research decades ago, had built a foundation for the current context. In addition, she thanked the speakers for their presentations, Deirdre Clune MEP for hosting and the Ms Pietikäinen and Ms Penkova for their contributions, as well attendees for joining the event.