When publishing using data from the TriNetX network or TriNetX as a method, the following guidelines must be adhered to:
Network to be used
The primary TriNetX data network for scientific use and publications is TriNetX Research. In reasonable exceptional cases (e.g., if the topic of the project is related to clinical trials or validation of the network for use in clinical trials), TriNetX Live can be used.
Use of the appropriate network
Contracts with TriNetX member HCOs do not always allow the use of their data for publications. Therefore, during review of the manuscript and discussion with the author, clarification should be sought whether the appropriate network was used for the scientific project to be published.
Information not to disclose
Unless the publication is initiated and authored by a Healthcare Organization (HCO), no HCO-specific data should be shown in any publication, not even in an anonymized way (e.g., “site 1, site 2, site 3, etc.”). All results must be shown as aggregated statistics only.
TriNetX should be mentioned in the methods section.
A suggested adequate general description would read like:
If a TriNetX platform with browser-based real-time analytical features was used:
“….We used TriNetX, a global federated health research network providing access to electronic medical records (diagnoses, procedures, medications, laboratory values, genomic information) from approximately xy Million patients in yz large Healthcare Organizations. The TriNetX platform only uses aggregated counts and statistical summaries of de-identified information. No Protected Health Information (PHI) or Personal Data is made available to the users of the platform…”
If a dataset, downloaded from TriNetX, was used:
“….TriNetX, a global health research network provided a de-identified dataset of electronic medical records (diagnoses, procedures, medications, laboratory values, genomic information) from xy patients with [cohort definition]. The data is de-identified based on standard defined in Section §164.514(a) of the HIPAA Privacy Rule. The process by which Data Sets are de-identified is attested to through a formal determination by a qualified expert as defined in Section §164.514(b)(1) of the HIPAA Privacy Rule. Protected Health Information (PHI) or Personal Data is made available to the users of the platform…”
This general description should be followed by a description of the actual methods used including the date of the data download or when the analytics were performed.