Following the first NSG meeting of the year, the MII invited to a political evening on 13.02.2020. In a top-class panel discussion achievements of the first two years, remaining challenges and future goals were discussed in order to further advance medical research for faster diagnoses and targeted therapies in Germany.
After a welcome word by Christian Luft (State Secretary, Federal Minister of Education and Research), three keynote speeches provided initial impulses on the evening’s topic. Thereby the talks of Dr. Thomas Kostera (Bertelsmann Foundation), Esti Shelly (Head of Department Digitalization of the Israeli Ministry of Health) and Dr. med. Markus Leyck Dieken (gematik) illustrated the current gaps in health care digitalization between the German and the Israelian Health System. Markus Leyck Diecken, however, also mentioned new organizational structures and agile project approaches within the Gematik and announced a “race to catch up” and the research compatible ePA for 2023.
In addition to two members of the Bundestag, Stephan Albani (CDU/CSU) and Maria Klein-Schmeink (B90/Greens), Dr. Thomas Kriedel from the National Association of Statutory Health Insurance Physicians (KBV) also took part in the subsequent discussion. Prof. Dr. Ulli Prokosch, who represented the National Steering Committee of the MII as consortium leader of MIRACUM, completed the panel. In the discussion, which was moderated by Rebecca Beerheide (Deutsches Ärzteblatt), special attention was paid to the Patient Data Protection Act (PDSG) which is now available as a draft bill. Within the scope of the MII, this proposed paper is of great interest, especially with regard to the national Licensing of SNOMED CT, the establishment of a German Terminology Competence Center and data donations. As an important step of alignment between the MII and the KBV activities, Ulli Prokosch and Thomas Kriedel both highlighted the established cooperation in defining the MII core data set modules as well as the upcoming ePA medical information objects (MIOs) as FHIR profiles. While those semantic alignments were seen very positive, Ulli Prokosch, however, criticized some further aspects of the current PDSG draft regarding the planned research data center which would hinder a long term integration of the wealth of data currently being consolidated in the German university medicine data integration centers with contents in the future ePA. He therefore emphasized the urgent need to come to an agreement between the MII and the German state data protection officers concerning the specimen text for a modular broad consent.
Overall, important aspects for medical research, which will be highly relevant in the coming months, were addressed at this evening.
Clinicians in molecular tumor boards (MTB) are confronted with a growing amount of high-throughput sequencing data. Today, at German university hospitals, these data are usually handled in complex spreadsheets from which clinicians have to obtain the necessary information. A subgoal of the MIRACUM Use Case 3 (“From Knowledge to Action – Support for Molecular Tumor Boards“) was to gather a comprehensive list of requirements to be met by cBioPortal to support processes in MTBs according to clinical needs. cBioPortal is a platform that provides functions to – among others – analyze and visualize Next Generation Sequencing data and was selected as the foundation for the future implementation of the requirements identified.
To achive this goal, oncology experts at nine German university hospitals were surveyed in two rounds of interviews and in preparation for this a scoping review of possible relevant tools was conducted. For visual support in the second round, screenshot mockups illustrating the requirements from the first round were created. In the end, 24 requirements with sometimes several conceivable options were identified and 54 screenshot mockups were created. Some of the identified requirements have already been suggested to the community by other users or are currently being implemented in cBioPortal. This shows, that the results are in line with the needs expressed by various disciplines. According to our findings, cBioPortal has the potential to significantly improve the processes and analyses of an MTB after the implementation of the identified requirements.
The results of this very successful MIRACUM-wide collaboration have just been peer reviewed and published in the journal Diagnostics (https://doi.org/10.3390/diagnostics10020093).
In the meantime we have started to implement the most important and still missing functions for MTB in cBioPortal.
The Institute of Medical Bioinformatics and Systems Medicine at the Medical Center – University of Freiburg has successfully participated in the Next-Generation-Sequencing 2019 ring trials of the Professional Association of German Human Geneticists (BVDH, Berufsverband Deutscher Humangenetiker e.V.). The MIRACUM-Pipe (R/Bash), which was developed within the MIRACUM project in the Molecular Tumour Board Use Case 3, was used for the analysis pipeline for variant detection and could fulfil all necessary criteria and obtained the certification.
We are pleased to announce and would like to invite you to our 3rd annual MIRACUM Symposium. This year it will take place in Freiburg between March 26th – 27th.
Now that the project is halfway through, we would like to present our achievements to date to all interested parties. This will not only include news from the Data Integration Centers and the MIRACUM Use Cases, but also the first ever live demo of the MIRACUM research and patient portal! In addition, we will also take a look at the wider MII picture with contributions from speakers of the other three consortia and the MII coordinating office. Moreover, we are delighted to have on board three great keynote speakers with some interesting talks.
For further information and registration, please follow this link.
We are looking forward to an exciting third MIRACUM Symposium in Freiburg and we hope to see you there!
Photo: (c) Universitätsklinikum Freiburg/Britt Schilling
The Medical Valley Europäische Metropolregion Nürnberg and d.hip (Digital Health Innovation Platform) had organized a clinical data day on Wednesday, December 18th 2019 in Erlangen. Ulli Prokosch and Detlef Kraska used this opportunity to present the Medical Informatics Initiative and the MIRACUM consortium as well as the organizational and technical steps towards establishing a data integration center at Erlangen University Hospital. Both presentations can be found here.
On 2 December 2019, the Japanese-German-French Forum on AI and Healthcare took place in Tokyo. This event, organized by DWIH Tokyo, focused on Artificial Intelligence (AI) applications and national approaches to data sharing in healthcare. During a panel discussion on “Joint Database for Medical Data”, Prof. Dr. Thomas Ganslandt (Professor of Medical Informatics at the Mannheim Medical Faculty of the University of Heidelberg) was given the opportunity to present the approaches and solutions of the Medical Informatics Initiative (MII) for the interoperable and secure provision of routine data for medical research in Germany. The talk can be found as a video on YouTube and the corresponding slides here.
Furthermore, Prof. Dr. Ganslandt followed an invitation by the Heidelberg University Office Kyoto (HUOK) to give a Nichi-Doku Joint Lecture on “Leveraging Clinical Data for Research: The MIRACUM Consortium within the German Medical Informatics Initiative” on 4 December 2019 in Kyoto. The corresponding slides can be found here.
This year the MEDICA again took place in Düsseldorf from 18th to 21st November. Visitors to the largest international medical trade fair were able to inform themselves about the Medical Informatics Initiative and the individual consortia at the BMBF booth. Furthermore, MIRACUM was given the opportunity to present its work at the Health IT Forum. Tim Herrmann (MIRACUM Project Coordinator Magdeburg, Medical Faculty of the Otto-von-Guericke University Magdeburg) presented the milestones achieved in MIRACUM so far and gave an overview on the projects for the second half of the funding period. Additionally, Gunther Höning (CO-PI MIRACUM, University Medical Center Johannes Gutenberg University Mainz) gave a talk on “Meaningful Data Use and Sharing”. Both presentations are available under Conference Presentations 2019. All in all, MEDICA offered a good opportunity for interesting discussions and a lively exchange of experiences!
While Chancellor Merkel mentioned at the “Digitalklausur” of the German Government that there is still lots of work ahead and that we must make better use of our data, Prof. Dr. Thomas Ganslandt (Professor of Medical Informatics at the Mannheim Medical Faculty of the University of Heidelberg; MIRACUM PI) gave a presentation at the AMIA (American Medical Informatics Association) 2019 Annual Symposium in Washington, D.C., illustrating the results of the first successful cross-consortial project (the “Demonstrator Study”) of the German Medical Informatics Initiative. In this Demonstrator Study 19 German university hospitals from all four MII consortia collaborated to successfully demonstrate early-on access to data and cross-site analyses. The MIRACUM consortium provided its dockerized i2b2 distribution together with a bundled ETL pathway for importing the German §21 billing dataset as an essential component for getting the Demonstrator Study off the ground. The experiences gained during the project as well as further iterations of the platform will be applied in the upcoming cross-consortial use cases of the MII.
The presentation slides can be downloaded here.