Accepted for/Published in: Interactive Journal of Medical Research
Date Submitted: Aug 3, 2023
Date Accepted: Jul 17, 2024
Unlocking the potential of secondary data for public health research: A retrospective study with a novel clinical platform
ABSTRACT
Background:
Clinical routine data derived from university hospitals hold immense value for health-related research on large cohorts. However, utilizing secondary data for research purposes necessitates adherence to scientific, legal (such as GDPR, federal and state protection legislation), technical, and administrative requirements. This process is intricate, time-consuming, and susceptible to errors.
Objective:
The aim of this study was to streamline the research process involving secondary health data by developing, integrating, and evaluating an innovative and reusable platform, called Datenhotel, for hypothesis generation and replication.
Methods:
Using the University Medical Center Hamburg-Eppendorf as a prototypical example, key steps involved in researching secondary health data along with associated challenges were identified. By optimizing and partially replacing the trustee center, transfer unit, metadata repository, and specialized data integration center, the developed platform allows researchers to query routine data in a privacy-compliant manner and analyze it within a secure environment.
Results:
The proposed platform was successfully implemented at the University Medical Center and made accessible to all resident scientists and clinicians. We evaluated the platform by conducting an exemplary analysis on Parkinson's disease, where we provide additional evidence supporting a correlation between rest tremor and the emerging action tremor, using the routine data at the University Medical Center Hamburg-Eppendorf.
Conclusions:
The simplification of leveraging clinical data to promote exploration and sustainability in scientific research is achievable. The proposed platform holds the potential to serve as a technological and legal framework for other medical centers, enabling them to unlock the untapped potential within their routine data.
Citation
Request queued. Please wait while the file is being generated. It may take some time.
Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.