Elsie Services can be used by Physicians or other previously-authorised staff members working in the context of the same Healthcare Unit under professional confidentiality duties. Access to Elsie Services is only provided after a successful registration process that includes a medical license verification process. Patients can access Elsie’s services through their Elsie registered Physician. In order to access the Elsie online platform services, different types of data are collected.
This information may include demographic data such as personal and family medical history, age, physical features such as eye colour, behavioural information such as exercise habits, or self-declared ethnicity. Clinical data also includes all reports containing clinical information or clinical decision support information, obtained through the access to Elsie Services.
This information includes the genetic information generated after the collection of a biological sample as part of the process of requesting a Genetic Test from one of our Partners or a Genome Query through the Elsie platform. In connection with the Elsie Services, Coimbra Genomics collects, processes and stores this Genetic Information in an anonymous, private and secure location.
As you interact with Elsie Services online (including the main Elsie website, the Elsie ordering platform and additional tools), we use automatic data collection technologies to collect certain information about your equipment, browsing actions and usage patterns. This data may include details like these:
We collect this information to improve Elsie Services' performance. It will also helps us deliver better and more personalised features to you by enabling us to recognise you when you return to our Services, by storing information about your preferences and customising our Services according to your individual interests.
Except as otherwise described in this Policy, we do not share any Account Information, Clinical Information or Genetic Data with third parties without the data owner’s explicit consent.
Physicians, and any healthcare practitioners working under their supervision, with an active Elsie account will have full access to their patient’s personal, clinical and genetic information stored on Elsie. The Physician using the Elsie services is responsible for all the information included in the genetic test orders and forwarded from Elsie to a Laboratory Partner.
According to the definitions in Article 4(7) of the General Data Protection Regulation (GDPR) Regulation EU 2016/69, Coimbra Genomics is the data Controller of all personal data collected and stored on Elsie, whereas Physicians (and other healthcare practitioners with direct access to patient’s personal data) and Laboratory Partners act as data Processors of the data shared by Coimbra Genomics following Patient’s explicit consent for specific data processing activities.
Following the termination of the retention periods of patients’ clinical and genetic data set forth below, such data will continue to be kept by CBRA in an irreversible anonymized manner, and processed exclusively for research purposes. Once as from the date of termination of the retention periods the data will be irreversibly anonymized, it will not fit within the concept of personal data and therefore the underlying legal requirements on protection of personal data will not apply.
We primarily use your information to present and provide you Elsie Services. This includes the following:
To improve our Services or to develop new products and services, we may use your information as follows:
With explicit consent from patients, as described in Elsie Terms of Service, we do the following:
We do not use any collected data, from Account Information to Computer Information, to track user behaviour across website, to perform or change marketing campaigns, or to serve targeted ads. Likewise, we do not deliver, and will not deliver, any kind of advertising in Elsie Services.
Providing and maintaining Elsie Services requires the storage of collected data in multiple private formats and locations. The storage conditions of the data collected will vary depending on the type of data. All data and servers operate in a virtual cloud environment, which uses dedicated hardware in secure facilities. CBRA resorts to cloud storage services provided by external providers, that act as processors within the data storage operations performed by CBRA.
Account and demographic data will be stored in Elsie’s User Database for a period of up to 50 years. This information is kept exclusively to allow Physician identification upon login on Elsie platform and Patient identification in the scope of using Elsie Services.
Clinical data of patients are stored along with account data in Elsie’s User Database and adopt the same strict policies. Thus, patient’s Clinical Data will be stored in Elsie’s User Database to the benefit of the patients themselves or their relatives, for a period of up to 50 years following the date of upload of the first genetic test results in Elsie platform with reference to the patient’s account and in accordance with the applicable laws and regulations, notably on health and genetic information databases and with the applicable ethical principles. Thereafter, clinical and genetic data may only be stored and used by Coimbra Genomics on an irreversible anonymized manner so that it can be used collectively and anonymously for research purposes.
Genetic data will be stored in Elsie’s anonymous Genome Database.
The Patient’s Genetic Information will be associated with his Clinical data although the Genetic Data will be kept in an anonymized manner. Thus, Patients’ Genetic Data will be stored in Elsie’s anonymous Genome Database to the benefit of the patients themselves or their relatives, for a period of up to 50 years following the date of the upload of the first genetic test results in Elsie platform with reference to the patient’s account, and in accordance with the applicable laws and regulations, notably on health and genetic information databases and with the applicable ethical principles.
The Patient’s Clinical Information will be anonymously associated with his Genetic Data for Research Purposes. This data will be kept in Elsie for up to 50 years following the retention period specified above in relation to the use of genetic data for diagnosis / therapy decision making support.
You may contact Elsie Legal Support to request access to, correct or remove any personal information (from you or from your relatives) that you have provided to us. We may not accommodate a request to change information if we believe the change would violate any law or legal requirement or cause the information to be incorrect. Information that has already been de-identified and/or aggregated (including Aggregated Genetic Information) may not be retrievable or traced back for correction or removal from any database.
Elsie Legal Support contacts are the following:
You may also contact Elsie Legal Support to request the closure of your account or to remove patient’s data from Elsie’s records. By closing an Elsie account, access will be forfeited to any Elsie Services, including access to Partner results or patient information. After closing an Elsie account, we retain some Account Information in the account related purchase history. This enables us to provide ongoing support regarding prior purchases, and is also necessary for accounting, auditing and compliance purposes. We may also retain backup copies and archival files of collected information to satisfy legal obligations or regulatory requirements, including those set by the General Data Protection Regulation (GDPR). However, we will not share any information with any Partner or third party, except for information that has already been shared before after consent.
Elsie will only share Account Information, Clinical Information and Genetic Information with selected Partners only after you have authorised us to do so as part of using Elsie Services. We will share the Clinical Information and Genetic Information needed for the Partner to complete their Services and improve them over time. We enter into a written agreement with each Partner that requires the Partner to do the following:
We may disclose Account Information and information about your usage of our Services other than your Clinical Information or Genetic Information only in the following circumstances:
We may also disclose collected information, including Genetic Information:
Other than as described above, we will never provide collected information to anyone for any purpose under any circumstances.
Elsie strives to provide valid alternatives regarding the information we collect. The following tools are in place to improve how you control your information:
Elsie works with GoSquared to better understand our users and their behaviour and to enhance the performance of our services. You can learn more about GoSquared’s Privacy policies and opt-out at any time.
Coimbra Genomics has taken appropriate technical and organisational measures to guarantee data security, in particular to protect your personal data against access by third parties, as well as accidental or intentional modification, loss or destruction, notably through the encryption of Clinical and Genetic data. Such measures are reviewed periodically and adapted in line with the state of the art.
Elsie limits access to collected data to selected Coimbra Genomics’ employees who we believe need access to it to provide Services to you or to do their jobs. In addition, we put in place industry standard physical, technical, and procedural safeguards designed to secure your Account Information, Clinical Information, Genetic Information and any other personal information from accidental loss and from unauthorized access, use, alteration and disclosure.