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The Future of Medical Data Sharing in Clinical Neurosciences

By
Level
Intermediate

This workshop hosted by HBP, EBRAINS, and the European Academy of Neurology (EAN) aimed to identify and openly discuss all issues and challenges associated with data sharing in Europe: from ethics to data safety and privacy including those specific to data federation such as the development and validation of federated algorithms. 

 

Course Features
Lectures
Videos
Panel discussions
Lessons of this Course
1
1
Duration:
16:15

This lecture covers how you can make your data public through EBRAINS. This talk focuses on the ethical considerations for sharing data, the requirements that are imposed by various regulations, particularly for sharing human data. The lecture also includes a discussion of how EBRAINS designs its services to deal with the ethical and regulatory aspects of sharing these kinds of data.

2
2
Duration:
12:48

This lecture discusses the challenges of protecting hospital data.

3
3
Duration:
20:26

This lecture discusses differential privacy and synthetic data in the context of medical data sharing in clinical neurosciences.

4
4
Duration:
21:54

This lecture focuses on ontologies for clinical neurosciences.

5
5
Duration:
22:49

This talk presents state-of-the-art methods for ensuring data privacy with a particular focus on medical data sharing across multiple organizations.

6
6
Duration:
16:33
Speaker:

This presentation discusses the impact of data sharing in stroke.

7
6
Duration:
21:21

This talks discusses data sharing in the context of dementia. It explains why data sharing in dementia is important, how data is usually shared in the field and illustrates two examples: the Netherlands Consortium Dementia cohorts and the European Platform for Neurodegenerative Diseases.

8
8
Duration:
13:56

This talk introduces data sharing initiatives in Epilepsy, particularly across Europe.

9
9
Duration:
19:30

Not long ago, scientists in physiotherapy would claim for the need of big data and large initiatives in the US have already allowed to collect large retrospective data on recovery after brain injury and are working to collect prospective data. In Europe, there is a large field of collaboration in the field of aphasia supported by the European cooperation in Science and Technology that is collecting data on language recovery throughout the world. This lecture discusses recent advances in sharing big data for neurorehabilitation.

10
10
Duration:
21:37

This talks presents an overview of the potential for data federation in stroke research.

11
11
Duration:
27:09

This lecture explains the need for data federation in medicine and how it can be achieved.

12
12
Duration:
15:05

In this session the Medical Informatics Platform (MIP) federated analytics is presented. The current and future analytical tools implemented in the MIP will be detailed along with the constructs, tools, processes, and restrictions that formulate the solution provided. MIP is a platform providing advanced federated analytics for diagnosis and research in clinical neuroscience research. It is targeting clinicians, clinical scientists and clinical data scientists. It is designed to help adopt advanced analytics, explore harmonized medical data of neuroimaging, neurophysiological and medical records as well as research cohort datasets, without transferring original clinical data. It can be perceived as a virtual database that seamlessly presents aggregated data from distributed sources, provides access and analyze imaging and clinical data, securely stored in hospitals, research archives and public databases. It leverages and re-uses decentralized patient data and research cohort datasets, without transferring original data. Integrated statistical analysis tools and machine learning algorithms are exposed over harmonized, federated medical data.

13
13
Duration:
20:26

The Medical Informatics Platform (MIP) is a platform providing federated analytics for diagnosis and research in clinical neuroscience research. The federated analytics is possible thanks to a distributed engine that executes computations and transfers information between the members of the federation (hospital nodes). In this talk the speaker will describe the process of designing and implementing new analytical tools, i.e. statistical and machine learning algorithms.  Mr. Sakellariou will further describe the environment in which these federated algorithms run, the challenges and the available tools, the principles that guide its design and the followed general methodology for each new algorithm. One of the most important challenges which are faced is to design these tools in a way that does not compromise the privacy of the clinical data involved. The speaker will show how to address the main questions when designing such algorithms: how to decompose and distribute the computations and what kind of information to exchange between nodes, in order to comply with the privacy constraint mentioned above. Finally, also the subject of validating these federated algorithms will be briefly touched.

14
14
Duration:
16:44

The Medical Informatics Platform (MIP) Dementia had been installed in several memory clinics across Europe allowing them to federate their real-world databases. Research open access databases had also been integrated such as ADNI (Alzheimer’s Dementia Neuroimaging Initiative), reaching a cumulative case load of more than 5,000 patients (major cognitive disorder due to Alzheimer’s disease, other major cognitive disorder, minor cognitive disorder, controls). The statistic and machine learning tools implemented in the MIP allowed researchers to conduct easily federated analyses among Italian memory clinics (Redolfi et al. 2020) and also across borders between the French (Lille), the Swiss (Lausanne) and the Italian (Brescia) datasets.

15
15
Duration:
16:25
Speaker:

This talks presents ethics requirements of the Medical Informatics Platform, a data sharing platform for medical data using data federation mechanisms. The talk presents how the Medical Informatics Platform (MIP) works and which ethical requirements need to be considered when working with federated data.

16
16
Duration:
24:32

This lecture talks about the usage of knowledge graphs in hospitals and related challenges of semantic interoperability.

17
17
Duration:
15:43

This lecture discusses risk-based anonymization approaches for medical research.

18
18
Duration:
20:05

In this talk the speakers will give a brief introduction of the Fenix Infrastructure and Service Offering, before focusing on Data Safety. The speaker will take the participants through the ETHZ-CSCS offering for EBRAINS and all the HBP Communities highlighting the Infrastructure role in a service implementation in respect of Security. Particular attention will be on showing what tools ETHZ-CSCS provides to a Portal/Service provider such as EBRAINS, MIP/HIP, TVB, NRP amongst others. Finally there will be given a quick glimpse into the future and the role that “multi-tenancy” will play.

19
19
Duration:
14:56

The epilepsy SP actively promotes and supports epilepsy-related issues as well as educational and scientific activities within the framework of EAN. Our partners ILAE/ILAE Europe, EpiCare, EPNS and AOAN are actively involved. One of the major tasks is promoting submissions of session proposals for EAN congress balancing new scientific approaches and educational need for teaching courses. Outside of congress activities, contributions to e-learning facilities on the EAN website such as registrars reading list, scales and scores and breaking news are regularly presented or updated. Particular since the COVID pandemic, publications on COVID and any issues of epilepsy or seizures are regularly screened and summarized in neurology updates. In partnership with the ILAE/ILAE Europe, several guidelines are under preparation.

20
21
Duration:
15:39

The number of patients with dementia is estimated to increase given the aging population. This will lead to a number of challenges in the future in terms of diagnosis and care for patients with dementia. To meet these needs such as early diagnsosis and development of prognostic biomarkers, large datasets, such as the federated datasets on dementia. The EAN Dementia and cognitive disorders scientific panel can play an important role as coordinator and connecting panel members who wish to participate in e.g. consortia.

21
21
Duration:
24:52

This talk gives an overview of the Human Brain Project, a 10-year endeavour putting in place a cutting-edge research infrastructure that will allow scientific and industrial researchers to advance our knowledge in the fields of neuroscience, computing, and brain-related medicine.

22
22
Duration:
21:57
Speaker:

This lecture gives an introduction to the European Academy of Neurology, its recent achievements and ambitions.

23
23
Duration:
25:22

This lecture discusses the the importance and need for data sharing in clinical neuroscience.

24
24
Duration:
25:55

This lecture presents the Medical Informatic Platform's data federation for Traumatic Brain Injury.

25
25
Duration:
17:29

This lecture gives insights into the Medical Informatics Platform's current and future data privacy model.

26
26
Duration:
19:15

This lecture explains the concept of federated analysis in the context of medical data, associated challenges. The lecture also presents an example of hospital federations via the Medical Informatics Platform.

27
27
Duration:
26:33

This lecture gives an overview on the European Health Dataspace. 

28
28
Duration:
27:09

This lecture presents the Medical Informatics Platform's data federation in epilepsy.

29
29
Duration:
26:51

This lecture presents the Medical Informatics Platform's data federation in epilepsy.