EDS 2.0 transparency portal
Resilience attaches the utmost importance to protecting your personal data and complying with the General Data Protection Regulation.
The purpose of this Transparency Portal is to provide you with clear and transparent information on how we process and use your personal data within the framework of our health data warehouse authorized by the Commission Nationale de l'Informatique et des Libertés (CNIL Deliberation no. 2022-049 of April 21, 2022, supplemented by Deliberation no. 2023-088 of September 7, 2023).
If you are a patient, please visit our dedicated page.
💡 For more information on the data collected and processed as part of our Resilience remote monitoring solution for patients affected by cancer, you can consult our specific Privacy Policy directly from your Caregivers interface ("Legal" section).
Update
The Transparency Portal is regularly updated to take account of new research we carry out. We invite you to consult it regularly.
Purposes of using your personal data
The aim of the processing is to create a health data warehouse, i.e. a database designed to bring together data from different sources, which will be reused to conduct studies and research in oncology in order to improve the care and quality of life of cancer patients, and in particular :
- Develop, operate and improve our decision-making and medical management support tool, to enable healthcare teams to personalize their patients' care pathways.
- Develop and continuously improve a digital patient information and well-being tool (e.g., personalized activity programs for each patient).
- Carry out feasibility studies (screening) of the functionalities of our tool or of future research.
- Carry out research in oncology (studying similarities between patients and comparing data cohorts, representing and analyzing courses of treatment, detecting changes in behavior or evolutionary dynamics, etc.). This research will be carried out by Resilience, with the possible support of its partners (e.g. oncologists).
- Clinical evaluation of the tool
- Carry out analyses on medical management to deploy solutions in care routines
- Carry out analyses on medical management and optimization of care organization
- Conduct studies on remote monitoring technologies, their deployment, adoption and place in the healthcare technology landscape
This warehouse is constituted on the basis of Resilience's legitimate interest in carrying out such projects (Article 6.1 f) of the RGPD). The processing of health data is necessary for the purposes of scientific research (Article 9.2 j) of the GDPR) and to ensure high standards of quality and safety of medical devices (Article 9.2 i) of the GDPR).
Our ambition: better care for cancer patients.
All the research and studies carried out using this warehouse will be described in this Transparency Portal.
Definition: A personal data processing operation is an operation or set of operations involving personal data (e.g. collection, storage of your data, use for research purposes, etc.).
Identification of the data controller
The data controller for the creation of the health data warehouse is Resilience, a simplified joint stock company with capital of 18,838.56 euros, registered with the Paris Trade and Companies Register under number 893 834 173, whose registered office is at 6 rue d'Armaillé - 75017 Paris (France).
Definition: A data controller determines the purposes and means of personal data processing, i.e. the purpose of the processing and how it is to be carried out.
Governance
The health data warehouse is subject to a specific governance process involving oncologists, cancer patients and Resilience data scientists.
This device consists of :
- an internal Resilience steering committee
- a patient committee, made up of patients who are not Resilience employees, to ensure that Resilience projects improve people's care
- a scientific committee made up of internationally renowned medical experts. To find out more, click here.
Categories of personal data
As part of our healthcare data warehouse, we collect and process the following personal data relating to healthcare professionals:
🧑⚕️ Professional life (including your specialty, department and place of practice)
💻 Usage data for our Resilience Solution
These data are non-nominative (pseudonymized), i.e. they do not include any information that could directly identify you (surname, first name, e-mail address, etc.).
The collection of this data in our health data warehouse is not compulsory. Opting out will have no impact on your use of our remote monitoring solution.
To find out more about the information we collect on your patients, we invite you to visit our dedicated Patient Transparency Portal.
Definition: Personal data is any information that directly or indirectly identifies a natural person, based on a single piece of data (e.g. your first and last name, your e-mail address, etc.) or a combination of data.
Data source
The health data warehouse includes :
- data entered by users of our solution and data generated during its use;
- public data or data from the medical literature.
Shelf life
The data will be kept for 15 years to enable us to track progress:
- patients under surveillance: in the United States, the 5-year survival rate for patients has risen from 49% to 70% in 40 years (National Cancer Institute, 2018), which also means that patients are living longer with cancer - we are talking about a chronic disease more and more. Monitoring after cancer can last a lifetime: Resilience's mission is to accompany these patients, some of whom are taking long-term adjuvant treatments, for as long as is necessary to improve their quality of life under treatment, particularly by alleviating their side effects.
- to learn from these medical trajectories and be able to detect early signs of relapse.
At the end of this period, your data is deleted or anonymized for scientific research purposes.
Data recipients
Your personal data will be used by authorized Resilience staff to conduct oncology studies and research aimed at improving the care of cancer patients, within the limits of their respective responsibilities.
Our staff are bound by a strict obligation of confidentiality and cannot identify you. In fact, all your directly identifying data (for example, your first and last name) is not collected in our health data warehouse.
Security
Resilience maintains and implements technical and organizational measures to ensure the security of your personal data.
Our health data warehouse is hosted in France by OVHcloud, a certified health data hosting provider. Data is encrypted at rest and in transit.
Our employees must be authorized to access your data and are bound by a strict obligation of confidentiality. They are also trained in security and personal data protection.
Your rights
You may, at any time and without justification, object to the use of your personal data for our health data warehouse or for specific research. This objection will have no effect on your use of our mobile application or on your treatment by your healthcare establishment.
In accordance with applicable laws and regulations, you also have the following rights:
🗂️ Right of access: you have the right to request access to the personal data we hold about you, and you can ask for a copy (find out more).
✏️ Right of rectification: you can request rectification of any inaccurate or incomplete data concerning you (find out more).
🧽 Right of deletion: you can request the deletion of your personal data in certain circumstances (find out more).
🛑 Right to restrict processing : you have the right to restrict our processing in certain cases (find out more).
👼 The right to define directives relating to the retention, erasure and communication of your data after your death (find out more).
These rights may be exercised by contacting our Data Protection Officer at the following address: privacy@resilience.care or by post at Resilience (for the attention of the DPO) - 6 rue d'Armaillé - 75017 Paris.
You may be asked to provide a copy of your ID to ensure the confidentiality of your data.
If, after contacting us, you feel that your rights with regard to your data have not been respected by Resilience, you may submit a complaint to the Commission Nationale de l'Informatique et des Libertés (CNIL).
Project name | Project description | Project dates | Status |
---|---|---|---|
Continuous evaluation and performance monitoring of the Resilience Solution | The aim of the study is to assess the relevance of the diagnosis of side effects, and the short-term impact of the Resilience remote monitoring solution on the management of patients using it. For further information, please visit the Health Data Hub website. | Since October 2022 | In progress |
Implementation and evaluation of a nutrition program in the Resilience Solution | Malnutrition is significantly associated with a higher risk of developing different types of cancer, and impacts on the treatment taken (side effects, treatment abandonment). This study aims to gain a better understanding of malnutrition and undernutrition in patients affected by cancer, develop a specific pathway in the Resilience Solution (algorithms and dedicated content) to respond, and then evaluate its effectiveness. | Since March 2024 | In progress |