"A Great Opportunity for Health Services Research!"
Representatives of the 16 funded registries and the accompanying structure discussed the planned registry concepts on November 8, 2017. © TMF
"16 different, new, and quite diverse registers using a uniform register protocol – this is a great opportunity for health services research!" This was stated by Prof. Dr. Jürgen Stausberg (University of Duisburg-Essen) on the occasion of the kick-off workshop for model registers for health services research, whose conceptual development has been funded by the Federal Ministry of Education and Research (BMBF) since September 2017. The workshop on November 8, 2017, in Berlin was conducted by the accompanying project of the funding line, in which the TMF, in partnership with the German Network for Health Services Research (DNVF), supports the establishment of the registers.
"For health services research, high-quality registers are of central importance and an important component for the further development of the healthcare system. With funding from the BMBF, the DNVF can contribute its expertise to the development of new register projects and thus make a concrete contribution to quality improvement," said DNVF Chairman Prof. Dr. Edmund A. M. Neugebauer. The DNVF, which includes a variety of specialist societies and organizations, published a memorandum on registers in health services research in 2010 and has since regularly conducted methodology seminars based on this.
"We are pleased to have been commissioned to support the register projects. Here, we contribute our expertise in the establishment and operation of research data infrastructures, for example, in the areas of data quality or data protection issues. Our task is also to network the registers with each other and with already established registers," explained Sebastian C. Semler, Managing Director of the TMF. In recent years, the TMF has funded and conducted various projects for the establishment and operation of registers. The guideline on data quality in medical research, published in the TMF series, appeared in its second edition in 2014.
Project partner Prof. Dr. Jürgen Stausberg (University of Duisburg-Essen), co-author of the TMF guideline and spokesperson for the DNVF Workgroup Register, will focus on providing advice and support for the implementation of technical and methodological standards, as well as quality indicators in the conception and establishment of the registers in the accompanying project.
Registers are an important tool in health services research, whose task is to describe healthcare and contribute to the development and evaluation of new concepts for medical and organizational improvement of the healthcare system while considering costs. Registers document data on the course of treatment and/or illness of patients in routine care. Thus, they are an important database for analyzing healthcare under routine conditions, identifying opportunities for improvement, and assessing the quality of treatment in various facilities and care sectors.
The BMBF initially funds the registers within a nine-month conceptual development phase. Subsequently, registers for implementation will be selected for a multi-year implementation phase. Establishing a register requires the establishment of a data infrastructure with a range of challenges – from planning the IT and organizational structure and the quality of the methodology to data protection issues and problems of using secondary data to data management and ensuring sustainability.
As part of the accompanying project, the TMF, in partnership with the DNVF, will support the registers, particularly in the areas of quality management, establishment of IT infrastructures, and development of suitable data protection concepts. It will also establish cross-networking between the projects and with existing registers. Various workshops and workgroup meetings, as well as a register conference, are planned for this purpose. The results of the accompanying project will be made available to all health services researchers in Germany.
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