XEC Summary

The data driven lab development is being intensified by the fact that patients and potentially research respondents will have the data portability right to get a copy of their (raw) data copy (blue button). The GDPR (European Privacy Act – AVG) enforces any institution that has privacy sensitive (clinical and research) data to demonstrate that they have a data sharing process as well as their information security in place and auditable. We applied the FAIR Data Principles (Findable, Accessible, Interoperable, Reusable) to a data driven lab for genetic tests. The FAIR principles have since received worldwide recognition by various organizations including National Institutes of Health (NIH), the European Commission and industry suppliers as a useful framework for thinking about sharing data in a way that will enable maximum use and reuse across multiple stakeholders including Citizens (patients) Health insurers, doctors, pharmacists, Research Grant Organizations, Ministry of Health, Pharma and Biotech Industry. The big challenge is how to implement this?

Background

What differs the data driven lab from others and why do we think it’s important?

  • The data driven lab works closely with its instrument and kit suppliers and is directly linked to their best practice Standard Operating Procedure.
  • The lab has a Quality Control and Assurance process to monitor any change in the process. This process is fully automated, and the reporting is data driven.
  • The lab handles highly personal data. By design the lab data process uses de-identified data that is linked via multiple key to the personal data. This is required for privacy and security by design.
  • The lab delivers the test data for its primary use trusted to its discovery and clinical clients. The service uses standard data exchange interfaces, so it can be easily integrated with other electronic health data systems.
  • The data is archived by design using the FAIR principles. It is therefore Findable, Accessible, Interoperable and Re-usable for secondary use.
Role Organization Why
Using the scientific health data Research, Industry/Discovery Learn how clients receive personalized lab data and direct support
Creating the data Lab (Genetics, Pathology, Radiology) Learn about FAIR data curation and opportunities for (big data) re-use
Managing the data Management team Learn how the lab becomes part of a value network
Industry partners Lab instrument and data service providers Learn how to co-operate with labs and their clients and monitor the data quality
Data driven lab sponsors Health insurers. Research Grant Organizations. Ministry of Health. Industry. Citizens. Learn how a lab is key service component of a data driven health value chain

Costs
150€. Includes conference material, coffee/tea refreshments and lunch. Registration is mandatory.

Registration link
https://www.eventure-online.com/eventure/login.form?P6b031f42-3ab9-4b0a-881e-bfd545d15a9a

Datum: 13 december 2018
Locatie: Collegezaal 2 Erasmus MC Rotterdam
Tijd: 09:30 - 16:30

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