On 12 February 2019 the GO FAIR Personal Health Train (PHT) Implementation Network (IN) German Chapter workshop took place in Berlin.
|Oya Beyan, Oliver Kohlbacher, Stefan Decker, Matthias Löbe, Toralf Kirsten, Holger Stenzhorn, Anja Busch
|Oya Beyan, Oliver Kohlbacher, Matthias Löbe, Lukas Zimmermann
|Workshop agenda (link to pdf-file)
The main objective of the workshop was to introduce the Personal Health Train (PHT) approach for improving the reuse and analysis of sensitive data in distributed settings, and to discuss specific needs and use cases as well as strategies to achieve sustainable solutions on a national level.
The workshop had been designed to serve as a platform to bring communities together including but not limited to Medical Informatics Initiative projects, NFDI (National Research Data Infrastructure) networks, research data infrastructures, European networks, and projects.
The workshop consisted of four sessions. The first session was dedicated to introducing the GO FAIR PHT Implementation Network and the existing PHT concepts, technologies, and reference implementations. In the next session, different communities such as rare diseases, ELIXIR, and FAIR4Health platform presented their perspectives. The third session was designed as a collaborative discussion platform, where participants teamed up in three working groups, namely strategic vision, technical infrastructure, and use cases. The last session consisted of presentations of working groups and discussing a joint vision.
With this workshop, the GO FAIR International Support and Coordination Office established a German PHT chapter. The German chapter will work together with the International PHT implementation network. The office will support all activities that enable the building of a PHT implementation network in Germany. Stakeholders from Germany are invited to actively join the network and collaboratively work on future solutions for the PHT German chapter.
Chairs opened the workshop, welcomed the participants and addressed the agenda.
Session 1: Introduction of the GO FAIR PHT Implementation Network
Roman Siddiqui on behalf of TMF e.V., Berlin welcomed the participants and presented the goals, membership landscape and working groups of the TMF. The role of the TMF in standardization and quality control was emphasized.Welcome_GO FAIR_TMF
Anja Busch represented the German GO FAIR International Support & Coordination office on behalf of Klaus Tochtermann. She presented the objectives and organizational structure of the GO FAIR initiative, and introduced the GO BUILD, GO CHANGE, and GO TRAIN tracks and rules of engagement to implementation networks. She also informed participants on the available support.PHT-IN_GO FAIR presentation_Anja Busch
Oya Beyan from the Fraunhofer Institute for Applied Information Technology presented the GO FAIR Personal Health Train implementation network. Guiding principles of the PHT and its innovative approach for data sharing were presented. Main concepts, components, and existing implementations were introduced. The German Chapter of the PHT train had been discussed.GO FAIR PHT IN German Chapter
Oliver Kohlbacher from the Centre for Bioinformatics Tübingen (ZBIT), University of Tübingen introduced the current prototype implementation of the PHT within the German Medical Informatics Initiative and demonstrated an application to the demonstrator studies based on the National Core Dataset of the Medical Informatics Initiative.2019_PHT_IN_2019-02-12_Oliver Kohlbacher
Session 2: Perspectives from Communities
Marco Roos from the Human Genetics department of Leiden University Medical Centre (LUMC) reported on the GO FAIR Rare Disease community and transition of FAIR principles. Infrastructure for rare diseases such as the European Reference Networks, and European Joint Program on Rare Diseases (EJP RD) had been introduced and challenges to use data for efficient care and research at the global level had been discussed.
EJP RD FAIR based virtual platform and a vision of connecting EJP-RD FAIR data points to PHT had been explored.
Jen Harrow from ELIXIR, Wellcome Genome Campus introduced ELIXIR and provided an overview of the ELIXIR platforms for data resources, interoperability, tools, computing, and training. ELIXIR infrastructure and services for a federation of human genome data and sharing them across borders had been addressed. The IMI FAIRplus project and its Capability Maturity Model Integration approach had been introduced.ELIXIR_PHT_Jen Harrow_12Feb19v2
Matthias Löbe from theInstitute for Medical Informatics, Statistics and Epidemiology (IMISE), Leipzig University introduced the FAIR4Health project which focuses on the FAIRification of health data and demonstration of the benefits of its sharing and re-use. FAIR4health approach for the FAIRification of local data sets and the platform for delivering data-driven services had been discussed.2019-02-12 FAIR4Health – GO FAIR PHT Berlin_Matthias Löbe
Session 3: Working Groups
The Strategic Vision group evaluated the current landscape of the projects, identified challenges and set goals for the next five years.
|Key Points from the Strategic Vision Working Group Discussion
|The overlap between projects and alignment
We observed from presentations that there is considerable overlap between projects. Many projects aim to develop FAIRification guidelines, have a goal to apply federated, distributed analytics solutions. Projects, goals and standardization efforts need to be aligned.In Germany, the NFDI projects such as NFDI4Health might be an umbrella involving GO FAIR Germany.On the European level EOSC (European Open Science Cloud) bringing together current and future data infrastructures. A demonstrator within EOSC4life can be considered. Funding option for short time technical projects through ELIXIR can be explored.Challenges
Following challenges are identified as critical for the realization of the PHT:
The afternoon session on the Technical Implementation of the PHT identified several key challenges and suggested directions for future implementations.
|Key Points from the Technical Infrastructure Working Group Discussion
|Overcome the Trusted Third Party Restriction
Current implementation efforts include at least one central service, the Docker Registry, that is known and addressable by several other services via HTTP. The operator of such an instance can access all images within the registry, hence the operator needs to be trusted. Avoidance of such trusted third parties leads to a preference for decentralized approaches. A potential Peer-to-Peer approach technology might avoid centralization and constitute a platform for developments efforts.Rich Station Metadata Publishing
A train is associated with a set of stations that it visits, potentially with a certain order. The construction of such routes needs to be assisted by metadata, which is provided by the stations. Station metadata should provide information on data quality and completeness. A metadata server may keep an index of available data resources at stations
Improve Data Findability
Station – Train Communication
The use cases working group identified the possible application areas of PHT in healthcare and life science domain.
|Key Points from the Use Cases Working Group Discussion
|This Group had identified a set of Use Cases that could benefit from the PHT approach, such as:
The importance of providing FAIR data at the creation had been emphasized:
The role of ontologies and vocabularies are underlined:
Session 4: Discussions, Summary and Outlook
Working groups presented and discussed their results.
The alignment between ongoing projects was discussed. Suggested collaborations:
- Establish a knowledge exchange forum.
- Organize topic focused hackathons.
- Organize training meetings “How to…”, reach out the GO FAIR training pillar INs
Collaboration with international partners should be developed:
- In rare diseases community, the commonalities and complementarities between developing the PHT and the EJPRD mixed /federated infrastructure can be identified.
- ELIXIR interoperability meetings can serve as a platform.
Next steps defined as:
- Write a German manifesto. The international manifesto has been published. Start building a German chapter and including more parties.
- Consider organizing a follow-up workshop.
- Create a platform/website with information.
- Develop specifications: Possible to join regular International PHT architecture group meetings.