Personal Health Train workshop: a report

On 10 November 2016, the people behind the Personal Health Train (PHT) (André Dekker of Maastro Clinic and Peter-Bram ’t Hoen of LUMC) and PRANA-Data (Wessel Kraaij of TNO) organised a workshop in Utrecht. PRANA-Data is a COMMIT project.
The PHT initiative aims to increase the use of existing biomedical data for research into personalised health and medicine. During the day, over 30 people discussed technical solutions with regard to the Personal Health Train architecture.

The day started with introductions of the PHT concept by André Dekker (via EuroCAT), Health-RI and ELIXIR-NL by Ruben Kok, and the PHT Limburg by Esther Bloemen (Zuyd Hogeschool). The Personal Health Train Limburg is an eight-year project which will get underway on 1 January 2017 thanks to funding by the Province of Limburg. It will act as a pilot project and test ground for the national PHT (having said that, it is hoped that the national project will be able to acquire sufficient partners and funding to run simultaneously under its own steam), creating a mutual developing and learning environment for the optimal PHT.

Next, there were three focus sessions, allowing distinguished and up-and-coming speakers to share their views on the snags, essential parameters and opportunities in the fields of privacy & security, FAIRness of data and distributed learning:

  1. ‘Privacy & Consent & Security & Ethics’ – moderator Wessel Kraaij, speakers Maurice Verheesen (Data Computing), Marc van Lieshout (TNO), André Boorsma (TNO), and Derk Arts (Castor)
  2. ‘Data stations, integration & making data FAIR’– moderator Peter Bram ‘t Hoen, speakers Luiz Bonino (DTL), Peter Walgemoed (Carelliance), Jantine Dirksen (Quaero Systems), and Kees van Bochove (The Hyve)
  3. ‘Federated, remote analysis, distributed learning’ – moderator André Dekker, speakers Irene Nooren / Rens Groenewegen (SURFsara), Johan van Soest (Maastro Clinic), and Mark Wilkinson (Centro de Biotecnología y Genómica de Plantas UPM-INIA)

Conclusions

The most important outcomes of the workshop were

  • PHT qualifies as a vehicle for the use of health care and research data. Health care and health research domains are becoming intertwined. The PHT and its interoperability standards could serve both domains.
  • Patients and patient organisations should be the main guards / stewards of the PHT, enabled through personal lockers. ‘Patients in control’.
  • Research is of high value for patients, e.g., shorten the research-to-bedside cycle, personalised life style advice.
  • Privacy and security aspects of PHT are of utmost importance; several parallel technical solutions to achieve this exist.
  • The PHT needs to install a national ethical / legal review board for data type research.
  • PHT should connect to related initiatives like MedMij and RESPECT4U .
  • PHT Limburg will act as a pilot project and test ground for the national PHT.
  • The PHT initiative needs to complete the inventory of public and private partners who are willing to help build components of the PHT.
  • We are building a core writing team to present the PHT to possible funding agencies.

Next steps

The next logical step in the PHT development is to gather forces, so the workshop concluded with an appeal to the attendees to let the organisers know if they see themselves as partners in the PHT initiative, and if so, in which part of the project (i.e,  infrastructure / track, data storage / stations, or distributed learning systems / trains).

You can indicate your interest on https://www.dtls.nl/fair-data/personal-health-train/jump-on-the-train/

Presentations
Introduction Andre Dekker
Ruben Kok
Esther Bloemen
Marc van Lieshout
Peter WalgemoedLuiz Bonino
Kees van Bochove
Irene Nooren
Johan van Soest
Mark Wilkinson

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