Factors influencing harmonized health data collection, sharing and linkage in Denmark and Switzerland: A systematic review.

Danuta Wasserman,Lester Darryl Geneviève,Tenzin Wangmo,Andrea Martani,Maria Christina Mallet,Bernice Simone Elger

doi:10.1371/journal.pone.0226015

Abstract

IntroductionThe digitalization of medicine has led to a considerable growth of heterogeneous health datasets, which could improve healthcare research if integrated into the clinical life cycle. This process requires, amongst other things, the harmonization of these datasets, which is a prerequisite to improve their quality, re-usability and interoperability. However, there is a wide range of factors that either hinder or favor the harmonized collection, sharing and linkage of health data.ObjectiveThis systematic review aims to identify barriers and facilitators to health data harmonization—including data sharing and linkage—by a comparative analysis of studies from Denmark and Switzerland.MethodsPublications from PubMed, Web of Science, EMBASE and CINAHL involving cross-institutional or cross-border collection, sharing or linkage of health data from Denmark or Switzerland were searched to identify the reported barriers and facilitators to data harmonization.ResultsOf the 345 projects included, 240 were single-country and 105 were multinational studies. Regarding national projects, a Swiss study reported on average more barriers and facilitators than a Danish study. Barriers and facilitators of a technical nature were most frequently reported.ConclusionThis systematic review gathered evidence from Denmark and Switzerland on barriers and facilitators concerning data harmonization, sharing and linkage. Barriers and facilitators were strictly interrelated with the national context where projects were carried out. Structural changes, such as legislation implemented at the national level, were mirrored in the projects. This underlines the impact of national strategies in the field of health data. Our findings also suggest that more openness and clarity in the reporting of both barriers and facilitators to data harmonization constitute a key element to promote the successful management of new projects using health data and the implementation of proper policies in this field. Our study findings are thus meaningful beyond these two countries.

Highlights

The digitalization of medicine has led to a considerable growth of heterogeneous health datasets, which could improve healthcare research if integrated into the clinical life cycle
This systematic review provides a comprehensive overview of projects from either Denmark or Switzerland which involved the collection, linking or sharing of data and of the barriers and facilitators related to the usage of health data therein reported
Our study includes a broad range of projects relying on data from different sources and contexts and it confirms that studies involving the harmonization, linking or sharing of health data still encounter a high number of obstacles, and underscores that barriers have prompted the development of numerous solutions

Summary

Introduction

The digitalization of medicine has led to a considerable growth of heterogeneous health datasets, which could improve healthcare research if integrated into the clinical life cycle. This process requires, amongst other things, the harmonization of these datasets, which is a prerequisite to improve their quality, re-usability and interoperability. There is a wide range of factors that either hinder or favor the harmonized collection, sharing and linkage of health data

Results

Discussion

Conclusion