On 10 November The Hyve attended the personal health train workshop in Utrecht, which was organized for the active members of and all parties interested in the Personal Health Train (PHT) initiative.
The workshop started with introducing the PHT concept and outlining the main aim of the PHT initiative – to increase the use of existing biomedical research data in personalized health and medicine. Personal Health Train is an 8-year initiative starting on 1 January 2017 on the funding of the Province of Limburg.
During the day, three main topics were visited during panel sessions:
- Privacy & Consent & Security & Ethics
- Data stations, integration & making data FAIR
- Federated, remote analysis, distributed learning
The Hyve, represented by Kees van Bochove, gave a talk during the second session with the title “How can we build a strong and thriving open source / open data community around FAIR principles?”. Slides from Kees can be found here.
Amongst the conclusions of the meeting, DTL Personal Health Train workshop report included the high value of PHT for patients and patient organizations (thus suggesting that patients and patient organizations should be the main stewards of the PTH), the need to establish a national ethics review board for various types of research and corresponding data types, and the necessity to use existing knowledge in the related areas, e.g., connect to such related big data and health care initiatives as MedMij and RESPECT4U. The meeting ended with asking the attendees to join the PHT initiative for any part of the project they are interested in (e.g., infrastructure / track, data storage / stations, or distributed learning systems / trains).
