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

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.

Evolution or Revolution? Recommendations to Improve the Swiss Health Data Framework

“…Purposing sampling is an established sampling strategy in qualitative research which consists in "selecting "information rich" cases, that is individuals, groups, organizations, or behaviours that provide the greatest insight into the research question" (35). A first list of potential experts was drafted based on literature analysed for the systematic review (30) that was also conducted as part of the project. Potential experts to be interviewed were divided according to their occupation and/or expertise into three categories: (1) researchers working on projects of national importance which involved the collection and sharing of health data from different sources; (2) policymakers and public officials involved in the health data framework; and (3) directors or administrators of institutions having a health database.…”

“…This study is part of a broader project aimed at identifying, mapping and ordering current deficiencies of the health data infrastructure and data culture in Switzerland and the possible solutions thereto (29). The project included also a systematic review (30) and the analysis of relevant legal (31,32) and ethical (33) issues. From the qualitative part of the project, an article on the conception of health data ownership has been written (34).…”

Systemic Fairness for Sharing Health Data: Perspectives From Swiss Stakeholders

“…The eligibility criteria for participation are researchers and policymakers working in the Swiss healthcare domain or individuals, with a relatively high position, involved in the collection, curation, sharing, linkage, and management of health datasets (e.g., registries, hospital IT infrastructure, national/regional data initiatives or hospital directors). As part of the overall aims of the SMAASH project, we carried out a systematic review ( 35 ) on projects collecting, sharing, and linking health data. Through projects analyzed in the review, we were able to recruit some of our participants.…”

'It’s not something you can take in your hands'. Swiss experts’ perspectives on health data ownership: an interview-based study

“…An initial list of potential interviewees from the three experts' groups was elaborated from the studies considered in a systematic review conducted previously by our team. 38 The objective of our sampling strategy was to include both experts on the topic of health data from a more practical side (eg, researchers, hospital directors) and those with a more institutional perspective (eg, policymakers, directors of health registries). Often, experts had (or had previously had in their career) more than one role.…”