Federating patients identities: the case of rare diseases.
Meriem MaaroufiPaul LandaisClaude MessiaenMarie-Christine JaulentRémy ChoquetPublished in: Orphanet journal of rare diseases (2018)
We examined and discussed the risks of collisions and the creation of duplicates as well as the risks of patient re-identification. We discussed our choice of nominative input information in light of that used by other patient identification solutions. The IdMR is a patient identifier that enables identity federation and file linkage. The simplicity of the algorithm and the universality and stability of the input data make it a good candidate for European cross-border rare disease projects.
Keyphrases
- case report
- end stage renal disease
- chronic kidney disease
- newly diagnosed
- machine learning
- peritoneal dialysis
- prognostic factors
- healthcare
- gene expression
- electronic health record
- big data
- social media
- genome wide
- bioinformatics analysis
- patient reported outcomes
- climate change
- artificial intelligence
- data analysis
- men who have sex with men