On 26 June, the Public Involvement team held a consultation to explore data management and data sharing within the context of the ACCESS-AD (Advancing Clinical Care and Equity through Scalable Solutions in Alzheimer’s Disease diagnosis and treatment) project. ACCESS-AD is a pan-European, public–private partnership working to ensure that scientific advances in Alzheimer’s disease diagnosis and treatment can be delivered across diverse healthcare settings. By integrating brain imaging, biomarkers, digital tools, new treatments and real-world evidence, ACCESS-AD will enable earlier diagnosis, safer use of disease-modifying therapies and more equitable access to care.
InRAD (International Registry for Alzheimer's Disease and Other Dementias) a registry that helps with the collection, combination, and comparison of real-word data, a partner in ACCESS-AD, will be used across ACCESS-AD study sites for data collection, ultimately integrating data, people, and local initiatives. Investigators at InRAD are developing the ACCESS-AD governance infrastructure, including developing informed consent forms and patient information sheets. As part of their work, they were interested to hear from people with lived experience to understand their preferences in relation to informational needs and consent preferences for data management and sharing.
Six people with lived experience (three from Alzheimer Europe’s Working Groups and three from Kings College London’s Care Network) attended an online meeting and provided rich and insightful information about potential consent and data sharing process, data stewardship and the use of Artificial Intelligence. Collaborators at InRAD welcomed the feedback and will use the information collected to inform the development of information and consent materials.
The session was facilitated/hosted by Ana Diaz (AE) with the support of Faye Forsyth (AE). The team was joined by Zunera Kahn (Kings Collage London) and Alex Giehrl and Jean Vonsy from InRAD, who are ACCESS-AD consortium partners. More information about the ACCESS-AD project can be found here: https://www.access-ad.org/. More information about InRAD can be found here: https://www.inradnetwork.org/
ACCESS-AD is funded by the European Union, the private members, and those contributing partners of the IHI JU, under grant agreement number 101253010. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the aforementioned parties. None of the aforementioned parties can be held responsible for them.
