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CC BY-NC-ND 4.0 · Methods Inf Med 2021; 60(S 01): e1-e8
DOI: 10.1055/s-0041-1724104
Original Article

Recent Trends in Patient Registries for Health Services Research

Authors

  • Jürgen Stausberg

    1   Institute for Medical Informatics, Biometry and Epidemiology (IMIBE), Faculty of Medicine, University Duisburg-Essen, Essen, Nordrhein-Westfalen, Germany

  • Sonja Harkener

    1   Institute for Medical Informatics, Biometry and Epidemiology (IMIBE), Faculty of Medicine, University Duisburg-Essen, Essen, Nordrhein-Westfalen, Germany

  • Sebastian C. Semler

    2   TMF Technology, Methods, and Infrastructure for Networked Medical Research, Berlin, Germany

Funding The project was funded by the German Federal Ministry of Education and Research under contracts 01GY1720A/01GY1720B and 01GY1917A/01GY1917B. The authors gratefully acknowledge the cooperation with the six registries.
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Abstract

Background Patient registries are an established methodology in health services research. Since more than 150 years, registries collect information concerning groups of similar patients to answer research questions. Elaborated recommendations about an appropriate development and an efficient operation of registries are available. However, the scene changes rapidly.

Objectives The aim of the study is to describe current trends in registry research for health services research.

Methods Registries developed within a German funding scheme for model registries in health services research were analyzed. The observations were compared with recent recommendations of the Agency for Healthcare Research and Quality (AHRQ) on registries in the 21st century.

Results Analyzing six registries from the funding scheme revealed the following trends: recruiting healthy individuals, representing familial or other interpersonal relationships, recording of patient-reported experiences or outcomes, accepting participants as study sites, active informing of participants, integrating the registry with other data collections, and transferring data from the registry to electronic patient records. This list partly complies with the issues discussed by the AHRQ. The AHRQ structured its ideas in five chapters, increasing focus on the patient, engaging patients as partners, digital health and patient registries, direct-to-patient registry, and registry networks.

Conclusion For the near future, it can be said that the concept and the design of a registry should place the patient in the center. Registries will be increasingly linked together and interconnected with other data collections. New challenges arise regarding the management of data quality and the interpretation of results from less controlled settings. Here, further research related to the methodology of registries is needed.

Keywords

health services research - patient-reported outcome measures - patients - registries - trends


Publication History

Received: 08 September 2020

Accepted: 19 December 2020

Article published online:
16 April 2021

© 2021. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution-NonDerivative-NonCommercial License, permitting copying and reproduction so long as the original work is given appropriate credit. Contents may not be used for commercial purposes, or adapted, remixed, transformed or built upon. (https://creativecommons.org/licenses/by-nc-nd/4.0/)

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