Active GO FAIR Implementation Network
The undersigned represent major public and private stakeholders in health, healthcare and biomedical research, who are currently developing the ‘Personal Health Train’ (PHT). This is a distributed infrastructure that enables the use and reuse of health data for the benefit of individuals and society. The PHT aims to advance health, healthcare and biomedical science through a shared infrastructure to support data management (healthcare data, health & lifestyle data, and biomedical research data), data analysis, and medical decision making. The PHT is a GO FAIR Implementation Network (IN). This manifesto is a formal statement of the principles guiding PHT development.
Main purpose and objectives
We recognise the increasingly important role of data in supporting professionals to bridge the gap between research and health care delivery, citizens navigating their own health and well being, and researchers to develop new methods in the prevention and treatment of disease. The PHT paradigm enables researchers to leverage the fragmented data resides in medical centers and repositories. It provides a technical, social, legal and ethical for data-driven decision making in medicine. It empowers citizens to have control over their own data, to partner with healthcare providers in medical decision making, and to support citizen-initiated research. It respects the autonomy and privacy of citizens and implements important aspects of responsible data science.
The PHT IN is an international network, but does also have individual national chapters that reflect needs on the national or regional level.
Targeted Objective for the IFDS covered by the PHT IN
The main goal of the PHT IN is a set of standards, guidelines, specifications and reference implementations of the core components of the PHT that will allow independently developed implementations to be interoperable.
Download the manifesto here.
Are you interested in joining PHT IN? Please express your interest by filling in the form below. Your request will be forwarded to the IN Coordinator(s) who will get in touch as soon as possible.
Andre Dekker – Maastricht University Medical Centre+
Oliver Kohlbacher – University of Tübingen, University Hospital Tübingen, and Max Planck Institute for Developmental Biology, Germany
Oya Beyan – RWTH Aachen Uni, Fraunhofer FIT
Peter-Bram ‘t Hoen – Centre for Molecular and Biomolecular Informatics, Radboud Institute for Molecular Life Sciences, Radboud University Medical Center Nijmegen
Stefan Decker – Fraunhofer FIT
Kevin Sayers – SIB Swiss Institute of Bioinformatics
Thierry Sengstag – University of Basel, SIB Swiss Institute of Bioinformatics
Martin Ingvar – Karolinska Institutet and ICHOM
Ronald Cornet – Amsterdam UMC
Inga Tharun – Program manager PHT NL, Lygature