Designing and piloting a generic research architecture and workflows to unlock German primary care data for secondary use

13Citations
Citations of this article
59Readers
Mendeley users who have this article in their library.

This article is free to access.

Abstract

Background: Medical data from family doctors are of great importance to health care researchers but seem to be locked in German practices and, thus, are underused in research. The RADAR project (Routine Anonymized Data for Advanced Health Services Research) aims at designing, implementing and piloting a generic research architecture, technical software solutions as well as procedures and workflows to unlock data from family doctor’s practices. A long-term medical data repository for research taking legal requirements into account is established. Thereby, RADAR helps closing the gap between the European countries and to contribute data from primary care in Germany. Methods: The RADAR project comprises three phases: (1) analysis phase, (2) design phase, and (3) pilot. First, interdisciplinary workshops were held to list prerequisites and requirements. Second, an architecture diagram with building blocks and functions, and an ordered list of process steps (workflow) for data capture and storage were designed. Third, technical components and workflows were piloted. The pilot was extended by a data integration workflow using patient-reported outcomes (paper-based questionnaires). Results: The analysis phase resulted in listing 17 essential prerequisites and guiding requirements for data management compliant with the General Data Protection Regulation (GDPR). Based on this list existing approaches to fulfil the RADAR tasks were evaluated—for example, re-using BDT interface for data exchange and Trusted Third Party-approach for consent management and record linkage. Consented data sets of 100 patients were successfully exported, separated into person-identifying and medical data, pseudonymised and saved. Record linkage and data integration workflows for patient-reported outcomes in the RADAR research database were successfully piloted for 63 responders. Conclusion: The RADAR project successfully developed a generic architecture together with a technical framework of tools, interfaces, and workflows for a complete infrastructure for practicable and secure processing of patient data from family doctors. All technical components and workflows can be reused for further research projects. Additionally, a Trusted Third Party-approach can be used as core element to implement data privacy protection in such heterogeneous family doctor’s settings. Optimisations identified comprise a fully-electronic consent recording using tablet computers, which is part of the project’s extension phase.

References Powered by Scopus

Data Resource Profile: Clinical Practice Research Datalink (CPRD)

1981Citations
N/AReaders
Get full text

The German National Cohort: Aims, study des

267Citations
N/AReaders
Get full text

Frequency of dizziness-related diagnoses and prescriptions in a general practice database

41Citations
N/AReaders
Get full text

Cited by Powered by Scopus

Secondary Use of Personal Health Data: When Is It “Further Processing” Under the GDPR, and What Are the Implications for Data Controllers?

12Citations
N/AReaders
Get full text

A theoretical model of health management using data-driven decision-making: the future of precision medicine and health

12Citations
N/AReaders
Get full text

eHealth implementation in Europe: a scoping review on legal, ethical, financial, and technological aspects

9Citations
N/AReaders
Get full text

Register to see more suggestions

Mendeley helps you to discover research relevant for your work.

Already have an account?

Cite

CITATION STYLE

APA

Bahls, T., Pung, J., Heinemann, S., Hauswaldt, J., Demmer, I., Blumentritt, A., … Schlegelmilch, F. (2020). Designing and piloting a generic research architecture and workflows to unlock German primary care data for secondary use. Journal of Translational Medicine, 18(1). https://doi.org/10.1186/s12967-020-02547-x

Readers' Seniority

Tooltip

PhD / Post grad / Masters / Doc 18

67%

Researcher 6

22%

Lecturer / Post doc 2

7%

Professor / Associate Prof. 1

4%

Readers' Discipline

Tooltip

Computer Science 7

27%

Medicine and Dentistry 7

27%

Social Sciences 6

23%

Business, Management and Accounting 6

23%

Save time finding and organizing research with Mendeley

Sign up for free