TMF establishes working group on medical registries
13.02.2023 18:15
The TMF Register Working Group would like to further develop the register landscape and promote exchange between registers, data users and politicians
Registries are important tools for measuring quality in the healthcare system, improving established treatment methods and developing new therapies. In many registries, care-related data is recorded over a longer period of time. This creates important data bases, both for care and for research. In order to further develop the registry landscape and promote exchange between registries, data users and politics, experts founded a registry working group on February 8, 2023 under the umbrella of the technology and methods platform for networked medical research (TMF for short).
Maintenance and further development of the maturity model
The TMF Working Group (AG) Register is concerned with how patient-related registers can be further developed against the background of changing health policy conditions and technological possibilities so that they can be used even more usefully for medical research and health care research. Important subject areas include the formulation of standards for registers, the harmonization and linking of data sets, quality management in the register, and business aspects of register operation. Another topic is the evaluation of registers and the question of how the usefulness of registers can be proven. “The working group sees the central task as being the maintenance and further development of the maturity model designed in the register report of the Federal Ministry of Health,” explains TMF board member Prof. Dr. Rainer Röhrig from the RWTH Aachen University Hospital. The maturity level of a register describes the stage of development of a register. This depends on the purpose of the intended data use. The different purposes for which the data in a register can be used are categorized in the maturity model into so-called usage dimensions. “The model now needs to be tested in practice and further developed,” says Röhrig.
Registries continue to benefit if the patients concerned actively contribute to their questions. The participation of patient representatives is therefore important for the further development of the maturity model.
With a view to the increasing internationalization of medicine, the aspects relevant to registries should also be discussed and a European network of registries should be supported.
Registries are important tools for medical research
Registers are an important instrument in health services research, on the one hand to describe health and sick care and, on the other hand, to contribute to the medical and organizational improvement of the health system by developing and evaluating new concepts, taking costs into account. “The TMF register working group is intended to help advance the quality of registers and further improve the conditions for optimal use. The further development of the registers takes place in close coordination with the German Network for Health Services Research (DNVF),” explains TMF board member Prof. Dr. Wolfgang Hoffmann from the University Medical Center Greifswald.
“With the new working group, the TMF is successfully continuing its preparatory work in the area of registers over the last 20 years,” says Sebastian C. Semler, Managing Director of the TMF. In 2021, the TMF wrote a register report for the Federal Ministry of Health, which provides groundbreaking recommendations for the further development of registers. Since 2017, the TMF has also been coordinating the accompanying project for the model health services research registers, which is funded by the Federal Ministry of Education and Research. “We are pleased that this bundling has been successful and hope to make a contribution to further digitalization in medicine and to connecting the registers to national infrastructures,” said Semler. The working group not only wants to offer expert support for register operators, but also actively contribute to the further development of the register landscape and improvement of the quality and interoperability of registers in Germany. To do this, the working group will draw on the expertise of already established working groups such as data quality, data protection and IT infrastructures. In addition to networking and networking between registry experts, intensive cooperation with registry working groups from other networks and initiatives is sought, in particular with the DNVF and the Working Group of Scientific Medical Societies.