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Research meets patient care: TMF provides support for digital transformation in medicine

150 attendees at the 10th TMF annual conference 2018 in Hamburg

20 March 2018. “TMF has provided support for digital transformation in medical research for over 15 years. So a TMF conference dedicated to digitalisation is somewhat of an anachronism,” observed Professor Michael Krawczak (University Medical Center Schleswig-Holstein, Kiel Campus), Chairman of the TMF Board of Directors, at the opening of the 10th TMF annual conference on 14 March 2018 at the University Medical Center Hamburg-Eppendorf. What is new, however, is the close link between research and healthcare – a focus that shaped the conference programme. At the two-day event, approximately 150 medical researchers, research managers, medical IT specialists, biobank experts and other professionals discussed the opportunities digital transformation is creating in medical research and healthcare. They also exchanged insights into challenges and possibilities for collaboration, and presented best-practice examples.

Conference chair, Dr Karoline I. Gaede (Borstel Research Center/German Center for Lung Research) underscored: “We find it especially important that we have made the significance of digitalisation from the patient’s point of view the very first topic of discussion at the conference.”

Against this backdrop, Stephan Kruip, Chairman of the German Cystic Fibrosis Association, himself a patient, and a member of the German Ethics Council, described how digital transformation has enabled the creation of a cystic fibrosis patient registry, beginning in the mid-1990s. The registry forms the basis for reports and scientific analysis, providing doctors with an overview of the disease progression and previous therapy of the individual patient – a resource that aids joint treatment decisions. Currently, the association plans to allow each patient to view their own registry data.

Furthermore, the German Ethics Council emphasised how digital transformation of healthcare is currently still being held back by practical considerations, as explored in its “Big Data and Health” official statement. There is always an essential balancing act – how to pave the way for promising, data-rich research, yet also ensure a high level of data privacy. This predicament was highlighted by Professor Alena Buyx (Kiel University), a member of the German Ethics Council. Above all, everyone involved in big data tasks – from IT professionals, researchers and doctors to citizens and patients – needs to understand how to handle sensitive data responsibly.

 

A trend towards patient-centred medicine – benefits for patients and researchers

“In Germany, there is a clear social trend towards patient-centred medicine,” reported Professor Martin Härter (University Medical Center Hamburg-Eppendorf). This greater focus on individual patients is needed for a variety of reasons – for instance, because patients’ expectations of their own role are changing, medical progress means more treatment options are available and must be decided jointly, it is ethically or legally mandated, or it is supported by empirical results.

This is still a nascent field of research in Germany – compared, for example, to the United Kingdom. Patient-centred medicine can provide an opportunity to better tailor research questions and information resources to real-world needs. In addition, scientists report gaining a deeper understanding of and new insights into their area of research. 

 

Pioneering projects

With its Medical Informatics Initiative (MII), the German Federal Ministry of Education and Research (BMBF) is driving forward digital transformation. Its aims include increasing data use and exchange between healthcare and research. As Sebastian C. Semler, Executive Director of TMF, explains: “The key element here is the establishment of data integration centres at participating university hospitals.” TMF, in cooperation with the German Association of Medical Faculties (MFT) and the German Association of Academic Medical Centers (VUD), is supporting activities and structures that provide assistance for coordinating overarching issues, e.g. interoperability and data sharing.

Furthermore, Susann Wrobel, Coordinator of Research IT at the University Medical Center Hamburg-Eppendorf (UKE), reported on the work of the MII’s interoperability working group. The UKE will be playing an active role in the SMITH consortium, and will benefit from the creation of a central, reusable research infrastructure – i.e. for future projects. In return, the UKE will contribute e.g. its experience with structured data.

 

Similar challenges call for close cooperation between Medical Informatics Initiative and German Biobank Node

The German Biobank Node (GBN) project parallels the MII, but focuses on biobank infrastructure. GBN is Germany’s national node within the European BBMRI-ERIC infrastructure. Additionally, it forms the core of the German Biobank Alliance (GBA). According to Dr Cornelia Rufenach, Executive Director of the GBN, “The aim of the GBA is to introduce shared standards to ensure the high quality of samples and data, and to provide these to national and international research projects.”

In the context of IT integration, the MII and the GBN face similar challenges, and have many overlapping legal-ethical, organisational and semantic issues. In a number of situations, these two projects can build upon each other’s efforts – as emphasised by Dr Martin Lablans (German Cancer Research Centre) and Professor Thomas Ganslandt (University Medical Centre Mannheim). They also discussed cooperation between the two initiatives from the point of view of participating university sites.

 

Using data from inpatient and outpatient care for research purposes

Professor Hans-Ulrich Prokosch (University Hospital Erlangen) spotlighted concrete examples of data sharing across multiple sites. The basic principle is the central analysis of federated data, where aggregated data can be sent back to the individual sites. This approach allows locations to be compared with each other. However, Professor Prokosch views the task of transferring research results to healthcare, and creating sustainable structures that improve care, as a major challenge. It requires the involvement of IT-knowledgeable medical professionals in research teams, plus language harmonisation between research and care.

Professor Eva Hummers-Pradier (University Medical Center Göttingen) stressed the need to use outpatient care data in research. However, a key hurdle will be compliance with data protection requirements – as concepts from clinical research cannot simply be transferred to outpatient care. The development of data protection standards is therefore of the essence. 

 

Supporting resources for digital transformation

TMF’s ToolPool portal for medical research is a central point of access to IT tools, guidance and other resources. It supports the planning and establishment of complex IT infrastructures for medical research. Moreover, ToolPool is not only aimed at IT professionals, but also researchers, coordinators, and employees at research organisations, as reported by Antje Schütt (TMF). The portal was launched in March 2017. A recently added function allows users to compare selected products.


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