Within the ELSIE ecosystem, stored data can be divided in three categories: 1) patient data, 2) genome data and 3) results from external providers.
Patient data regards the personal patient information, such as name, gender, birth date or address, among others. These data are securely stored in a database server and are regularly accessed during a regular daily medical workflow.
Patient data ownership is entitled to ELSIE, yet, it cannot be used for any other process outside ELSIE’s operations (as stated in ELSIE Terms of Service).
The genome data category includes the miscellaneous files obtained from an external sequencing provider and the ones generated by ELSIE’s proprietary bioinformatics pipeline. This dataset includes raw sequence data, variant-calling data and additional metadata required to streamline the Genome Query report generation process.
Genome data ownership is entitled to the patients. According to ELSIE’s Informed Consent, signed by patients and physicians during the medical appointment, ELSE is responsible for securely and privately storing these data.
Results from external genetic testing providers include test reports and other relevant files sent from labs to physicians, via ELSIE. These results are stored along with the private patient data. ELSIE does not receive or store any data pertaining the original production of these results.
The ownership of results from external providers is defined in the commercial agreement or Informed Consent signed between patients, physicians and the respective genetic testing lab.
- All ELSIE-related data are stored securely and privately by ELSIE.
- Private personal data is owned by ELSIE, private genome data is owned by patients and stored by ELSIE.
- At any moment, patients can request their data, both personal and genome, to be withdrawn from our servers.
- A link cannot be established between a given patient private data and his/hers genome data without the Patient’s Personal ELSIE Key. Hence, for instance, without the Patient’s Personal ELSIE Key we cannot match a patient name or passport number with his/hers genome data.
- External genetic testing labs are responsible for their results and associated data, and the underlying security and privacy of data.