Multi-level patient data federation and the development of personalised medicine for brain diseases
The Human Brain Project (HBP) plans to use anonymised data from hospitals throughout europe and to use that data, among other things, to discovery dissease signatures and contribute to making personalised medicine reality. But how can the HBP make sure that they stay within the lines of the law and how can they handle people’s data in a morally justifyable way. What does anonymous data actually mean, and how hard is it to achieve this. What is personalised medicine and what are disease signatures. What are the challenges and opportunities of personalised medicine, what might the social and ethical issues be that arise from these developments?
In the webinar on “Multi-level patient data federation and the development of personalised medicine for brain diseases”, eight experts from a broad variety of fields, gave talks about these questions from their own knowledgeable perspectives. The webinar has been recorded and the presentations and commentary sessions can be watched back below.
Click HERE for recordings of the first theme on Multi-level brain data federation and protection
Second theme: Development of ‘disease signatures’ and personalised medicine
Modern supercomputing technology makes it possible to integrate the federated data in HBP in detailed models and simulations of the brain. The purpose of this data mining is to identify clusters of patients with similar changes in the brain that will each constitute a ‘disease signature’. This means that the anonymized data will go through a process of re-personalization. It is the goal to link the new disease signatures back to symptoms and phenomenology of the disease as it appear to the doctor from whose patients the data have been collected. The new signatures hold the potential for researchers to identify the biological changes associated with disease and opening possibilities for early diagnosis and personalized medicine.
- Emilio Mordini, Managing Director and President of the Centre for Science, Society and Citizenship (CSSC)
- Doug Brown, Director of Research and Development, Alzheimer’s Society
- Barbara Prainsack, Professor, King’s College London, Department of Social Science, Health & Medicine
- Gregor Wolbring, Associate Professor, University of Calgary, Faculty of Medicine, Dept. of Community Health Sciences, Stream Community Rehabilitation and Disability Studies
|Personalised Medicine, and Psychiatric Diseases: The Main Societal Implications||Presentation Emilio Mordini||Commentary Emilio Mordini|
|Key Consideration in Effective Patient Participation||Presentation Doug Brown||Commentary Doug Brown|
|Challenges and Opportunities in Personalised and Data Driven Medicine||Presentation Barbara Prainsack||Commentary Barbara Prainsack|
|Personalised Medicine and Disease Signatures – Ability Expectation and Ableism||Presentation Gregor Wolbring||Commentary Gregor Wolbring|