Research on health data addresses many challenges, such as improving prevention, screening, and patient care strategies.
Although it relies on patients' personal data, the goal of this research is to obtain statistics that can be generalized to the population. Individual cases are therefore not what interests health data researchers. Rather, they seek to produce representative indicators from the information of an entire population of patients. The existence of health databases, provided they are secure, confidential, and patients are properly informed, now opens up new perspectives and makes it possible to strengthen the quality of research results.
This page presents the context and issues related to health data and the research carried out on this data. On this site you will find research conducted on the data and will be able to exercise your rights in accordance with the regulations.
What is health data?
Health data is any information concerning the health status of patients.
Examples include
- the medical diagnosis,
- the list of care and treatments administered,
- medical images such as X-rays or scans,
- but also biological samples (blood, saliva, biopsy, etc.) that can be analyzed to obtain biology results or information about your genes and their expression.
When and by whom is this health data collected?
When you see a healthcare professional, such as your doctor or pharmacist, they record information in a medical file. This data may relate to any point in your health journey, whether screening, care, long-term follow-up, etc.
When you voluntarily take part in a clinical trial, the trial organizer collects follow-up data in order to answer the research question.
This data is stored in the form of a database.
Why use health data?
To provide you with better care
This data is used first and foremost to provide you with better care. Providing care requires the coordination of several healthcare professionals, sometimes working in different departments or institutions. It is important for the care team to know your diagnosis, your history, your allergies, the medications you take, etc. Using this data allows everyone to have up-to-date information to care for you better.
To reimburse you
Some of this information is also used by the national health insurance system and by your supplementary health insurer to reimburse your medical expenses.
To improve prevention, screening, and care through research
This data can be very useful for better understanding health journeys, epidemics, and the factors that influence how diseases progress. This research is carried out to improve our health, services, and patient care.
Under what conditions is this health data used?
One of the main conditions for its use is that the data remains secure and confidential while ensuring transparency with you about how it is used.
Before building a database or conducting research, we make sure that the data flow is secure. The IT systems used must prevent access to the data by anyone who is not involved in your care or in the research. Furthermore, these people only have access to the information they need to carry out their care or research work.
For example, researchers generally do not need to know people's identities to conduct their research. Indeed, when data is used for research purposes, it is generally not your individual journey that is the subject of the research, but rather the journeys of all patients with similar characteristics. This allows us to better understand and better care for the community of patients affected by the same disease.
This is why the data entrusted to them does not contain names, first names, or contact details. Only the information strictly necessary to answer the scientific questions is transmitted.
Why and under what conditions is data shared?
Some research can be carried out by our research teams using the data we hold.
There are other situations in which other researchers have specific expertise, or in which we wish to take part in a collective effort to advance health knowledge. We may then conduct research in partnership or transfer the data to other researchers, while ensuring that the confidentiality of this data is properly respected.
In the event of a data transfer, we put a contract in place to guarantee security, compliance with the conditions of use of the data, and respect for the rights of the individuals concerned.
Why can there be several data sources?
On this site, you will see research projects that use data from several sources. These sources may be healthcare institutions providing data or other databases. In general, bringing together data from several origins improves the representativeness and robustness of the research results.
A few explanations:
To better understand the health journey
The databases we have are sometimes incomplete and do not provide an overall view of the health journey. When conducting research to better care for patients or to better understand how diseases appear or progress, it is sometimes possible for another health database to provide longer-term follow-up data. This is the case, for example, with data from the French National Health Data System (Système national des données de santé, i.e. national health insurance data).
Combining a database rich in short-term clinical information, such as a hospital database, with a less detailed database offering longer-term follow-up, such as the National Health Data System, greatly improves our understanding of diseases, treatments, and patient care within our healthcare system.
To improve the quality of research
Research on health data relies on statistical calculations. When research is carried out on data covering a large population, there is greater confidence in the quality and representativeness of the results than when they are obtained from a small sample of the population.
To answer certain questions, particularly about rare diseases, a database may not contain data on enough patients to reach a firm conclusion. It is the sum of data collected from many patients that makes it possible to detect signals that could not be detected otherwise. It is the sharing of this data with other research organizations that creates this wealth of information, enabling complex research projects to succeed.
What types of research will you conduct?
Building databases and sharing them opens up many possibilities and makes it possible, for example,
- To detect "weak signals", which are events that occur in only a small part of the population and are difficult to observe if the study gathers little data;
- To develop precision medicine, which consists of delivering the right drug at the right time to the right patient, based on each person's specific characteristics;
- To improve the safety of health products by enabling the most exhaustive possible monitoring of adverse events;
- To conduct health economics studies that report on the use of health products and their cost;
- To guide public health policy by providing information on the reality of health journeys,
- And other possibilities still, which must always serve the goal of improving public health.
What are my rights regarding the use of this data?
When data concerning you is used, you can exercise your rights:
- You can access the data concerning you: you will be provided with a copy of the data concerning you, as well as the list of uses made of it and the organizations responsible for those uses.
- You can correct this data: in the event of an error, you can request that data concerning you be corrected. If it is medical information, it is preferable to go through your healthcare professional, who alone can judge the accuracy of the information.
- You can object to the use of this data for research:
- You can object to the use of this data. This objection is not possible for uses that are made mandatory by law or that are necessary to carry out a task in the public interest, for example for health surveillance purposes.
- You can request that the use of the data concerning you be restricted, which temporarily prevents its use for projects, for example while it is being rectified.
- You can obtain the erasure of this data: it will then be deleted from the databases. This erasure must meet certain conditions and is not possible, for example, where there is an obligation to retain the data for a legal period.
- You can take the data concerning you with you: this allows you to obtain this data in a machine-readable format. For example, you can obtain the information you provided to a supplementary health insurer when you wish to switch, so as to avoid having to copy this information again to provide it to your new insurer.
These rights are exercised with the organization responsible for processing this data, via the form available on this site at the bottom of each information sheet, or at the contact address provided to you by the organization.
Your identity will be verified in order to protect you from identity theft, and your request will be answered within one month.