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. 2019 Dec 12;14(12):e0226015. doi: 10.1371/journal.pone.0226015

Table 1. Clustering of barriers and facilitators to harmonized health data collection, sharing and linkage.

Barriers Facilitators
Cluster Sub-cluster Cluster Sub-cluster
Ethical Privacy Ethico-Legal Ethical approval by REC/IRB
Respect for Autonomy Health Data Anonymization
Other Informed Consent
Legal Data Protection Regulations Patient data access rights
Divergence in National Legislations for Data Security and Privacy Confidentiality measures
Other Clarity of legislation for health data collection/sharing/linkage
Official/legal approval of project
Study according to International laws and regulations
Legislation allows project without consent or REC approval
Legislation requires mandatory reporting
Other
Technical Lack of Data Standards (data structure and semantics) Technical Data harmonization techniques
Data Quality Issues Data Linkage techniques
Limited Technical Capabilities
Other Other
Financial Lack of Funding Financial Securing funding
Other Public-Private partnership
Other
Political Mistrust between stakeholders Political Data Sharing Agreement
Data Ownership Building and maintaining stakeholder trust
Institutional/constitutional organization issues Data access control
Other Health System Structure
Other
Motivational Lack of research incentives Motivational Monetary Incentive
Stakeholder restricts access for re-use of data as deemed unfit for secondary use Easing workload through improvement of data collection
Stakeholder competing interests Memorandum of understanding to ensure collaboration until end of study
Other Other
Sociocultural Cultural clash for data collection/sharing/linkage Sociocultural Participant data access control
Other Other