„A great opportunity for health services research!“
Federal Ministry of Education and Research (BMBF) supports new register projects. This funding aims to create new and specifically patient-related registers of model character and high quality on important aspects of health services research.
Prof. Dr. Jürgen Stausberg (University Duisburg-Essen) called the project which comprises 16 different new registers with a unified record system “a great opportunity for health services research”. He spoke at the initial workshop in Berlin on 8 November co-organized by TMF and the German Network for Health Services Research (DNVF).
The latter published a memorandum on registries in healthcare research as early as 2010 and since then organized methodology seminars on a regular basis. Prof. Dr. Edmund A. M. Neugebauer, MHB Dean and DNVF president, underlined the essential significance of high-quality registers for health services research as important elements in advancing the care system. The BMBF funding, so Neugebauer, helps the DNVF to contribute its expertise to the development of new register projects and thus to quality improvements.
TMF director Sebastian C. Semler welcomed the assignment to support the register projects: „We will contribute our expertise in the creation and management of research data infrastructures, e.g. in terms of data quality or data protection issues. The assignment includes the interlinking of new and established registers.” Over the past years, the TMF supported and conducted various projects to build up and operate registers. The second edition of guidelines on data quality in medical research was published in the TMF series in 2014.
Registers are important tools in healthcare research. They are used to describe health and patient care and contribute to medical and organisational improvements of the care system via development and evaluation of innovative concepts, under consideration of the costs involved. Registers are used to document data on treatment and/or case history of patients in everyday care environments. Thus they constitute an important data basis to analyse care processes under routine conditions with the aim to identify improvement potentials and assess the quality of treatment in different facilities and sectors of health care.
The BMBF provides funding during an initial 9-month phase. Subsequently some registers will be selected for implementation over a period of several years. Setting up a register requires the build-up of a data structure, which involves a number of challenges – e.g. planning of IT structure and organization, quality of methods, data protection issues, use of secondary data, data management and ways to ensure sustainability.
TMF and DNVF will jointly support the new registers specifically with regard to quality management, creation of IT infrastructures and development of suitable data privacy concepts, and also ensure cross-linking between the new projects and existing registers. Various workshops and group meetings as well as a register conference are scheduled for this purpose. Results from the monitoring projects will be made available to all heath services researchers nationwide.
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