Good Practice Data Linkage

authored by

Stefanie March, Silke Andrich, Johannes Drepper, Dirk Horenkamp-Sonntag, Andrea Icks, Peter Ihle, Joachim Kieschke, Bianca Kollhorst, Birga Maier, Ingo Meyer, Gabriele Müller, Christoph Ohlmeier, Dirk Peschke, Adrian Richter, Marie Luise Rosenbusch, Nadine Scholten, Mandy Schulz, Christoph Stallmann, Enno Swart, Stefanie Wobbe-Ribinski, Antke Wolter, Jan Zeidler, Falk Hoffmann

Abstract

Individual data linkage of different data sources for research purposes is being increasingly used in Germany in recent years. However, generally accepted methodological guidance is missing. The aim of this article is to define such methodological standards for research projects. Another aim is to provide readers with a checklist for critical appraisal of research proposals and articles. Since 2016, an expert panel of members of different German scientific societies have worked together and developed 7 guidelines with a total of 27 practical recommendations. These recommendations include (1) research aims, questions, data sources and resources, (2) infrastructure and data flow, (3) data privacy, (4) ethics, (5) key variables and type of linkage, (6) data validation/quality assurance and (7) long-term use for future research questions. The authors provide a rationale for each recommendation. Future revisions will include any new developments in science and data privacy.

Organisation(s)

Center for Health Economics Research Hannover (CHERH)

External Organisation(s)

Otto-von-Guericke University Magdeburg
Techniker Krankenkasse (TK)
University of Cologne
Berlin-Brandenburg Myocardial Infarction Registry e. V.
Technische Universität Dresden
IGES Institut GmbH
University of Bremen
University of Applied Sciences for Health
University of Greifswald
Carl von Ossietzky University of Oldenburg
Technology, Methods, and Infrastructure for Networked Medical Research (TMF)
Epidemiological Cancer Registry of Lower Saxony
Leibniz Institute for Prevention Research and Epidemiology - BIPS
Central Research Institute for Ambulatory Healthcare in Germany (Zi)
DAK-Gesundheit Zentrale
Heinrich-Heine-Universität Düsseldorf
German Diabetes Center (DDZ)

Type

Article

Journal

GESUNDHEITSWESEN

Volume

81

Pages

636-650

No. of pages

15

ISSN

0941-3790

Publication date

08.08.2019

Publication status

E-pub ahead of print

Peer reviewed

Yes

ASJC Scopus subject areas

Public Health, Environmental and Occupational Health

Sustainable Development Goals

SDG 3 - Good Health and Well-being

Electronic version(s)

https://doi.org/10.1055/a-0962-9933 (Access: Open)