France

Healthcare System

France operates a Statutory Health Insurance (SHI) system, providing universal coverage to its residents through two main schemes: one primarily for the agricultural sector and another more general one. The system is financed mainly through employee and employer contributions, along with earmarked taxes on various revenues.

The healthcare system is overseen by the Ministry of Health, with the SHI managed by the Caisse Nationale de l'Assurance Maladie (CNAM). The central government retains significant control over the healthcare system, despite some decentralization to regional health agencies.

SHI covers a broad range of services, such as preventive care, specialist consultations, hospitalizations, prescription drugs, and maternity care, financing about 83% of total health expenditure. However, SHI doesn't fully cover some goods like dental and optical devices. Hospital care is covered over 90% by SHI, but it only covers 44% of costs for non-pharmaceutical medical goods in ambulatory (outpatient) care.

Supplementary private insurance (mutuelle) or Voluntary Health Insurance (VHI) plays a significant role, with almost 95% of the population having some form of VHI. Certain services not fully covered by SHI, like dental and optical care, often rely on this VHI or out-of-pocket payments.

All residents in France, including long-term foreign residents, contribute to the SHI and can access its benefits. The Assurance Maladie issues a health insurance card, the Carte Vitale, to beneficiaries. This card electronically submits claims data for reimbursement. Electronic health records (Dossier Médical Partagé) are also maintained for each patient, enabling efficient information exchange among healthcare providers. France has recently been placing more emphasis on prevention, health promotion, and patient empowerment.

Administrative or Claims Data

SNIIRAM

[1]

Sponsor, manager or home institution: Caisse Nationale de l'Assurance Maladie (CNAM) [2].

Type of information: All health care expenses, including outpatient visits, dispensed medication, procedures, chronic conditions, hospital admission diagnoses and procedures, date of death, date and nature of lab tests without results, as well as other information.

Source of Information: Includes data from 3 main claims systems (CNAMTS, RSI, and MSA) and almost all the smaller systems.

Data level: Patient level.

Number of Records: 98.8% of the French population as of 2017.

Date Range: 2003 onwards.

Open data access: Not publicly available. Instructions to request data for restricted content [3].

Information/Contact for data request: Contact information [4].

Echantillon généraliste de bénéficiaires (EGB)

[5]

Sponsor, manager or home institution: Caisse Nationale de l'Assurance Maladie (CNAM) [6].

Type of information: Identical to SNIIRAM, but on a smaller scale to be more manageable. The data structure is streamlined and simplified in the EGB.

Source of Information: Includes data from 3 main claims systems (CNAMTS, RSI, and MSA) and almost all the smaller systems.

Data level: Patient level.

Number of Records: 1/97 random permanent sample from the SNIIRAM database.

Date Range: 2004 onwards.

Data access: Not publicly available. Instructions to request data for restricted content [7].

Information/Contact for data request: Contact information [8].

PMSI

[9]

Sponsor, manager or home institution: Caisse Nationale de l'Assurance Maladie (CNAM) [10], and Agence technique de l'information sur l'hospitalisation (ATIH) [11].

Type of information: Admission date, duration of stay, main, related, and associate diagnoses coded in ICD-10, hospital admissions for medical, surgical, and obstetrical wards, and other information. All of that information is for both public and private hospitals.

Source of information: Recording of standardized medico-administrative data in a standard collection of information.

Data level: Patient level.

Number of Records: 98.8% of the French population as of 2017.

Data access: Not publicly available. Instructions to request data for restricted content [12].

Information/Contact for data request: Contact information [13].

Open Damir: Complete Database on Health Insurance Expenditure

Sponsor, manager or home institution: Caisse Nationale de l'Assurance Maladie (CNAM) [14].

Type of information: Six axes of analysis: period, benefit, care organization, care recipient, performing healthcare professional, prescribing health professional. Four amount indicators: total expenditure, health insurance reimbursement basis, amount reimbursed, and excess fees for health professionals. Three volume indicators: enumeration, amount, and coefficient.

Source of Information: Système National des Données de Santé (SNDS) [15].

Data level: Regional level.

Date Range: 2009 to 2021.

Open data access: Publicly available [16].

Information/Contact for data request: Contact information [17].

National data on health insurance expenditure for community care

Sponsor, manager or home institution: Caisse Nationale de l'Assurance Maladie (CNAM) [18].

Type of information: Type of expense item, type of benefit (care and cash benefits), type of performer (doctors by specialty, dental surgeons, medical auxiliaries, analysis laboratories, pharmacists, etc.), type of prescriber, date of treatment, repayment rate, type of risk covered (sickness, maternity, accident at work and occupational disease). The expenditure indicators are: the reimbursement base of the Health Insurance, the amount reimbursed, excess fees for healthcare professionals, the count of acts performed, and coefficients invoiced.

Source of Information: Système National des Données de Santé (SNDS) [19].

Data level: National level.

Date Range: 2010 to 2022.

Open data access: Publicly available [20].

Information/Contact for data request: Contact information [21].

National health insurance expenditure data for private health facilities

Sponsor, manager or home institution: Caisse Nationale de l'Assurance Maladie (CNAM) [22].

Type of information: Department and region of residence of the beneficiary, type of expense item, type of service, type of establishment, establishment category, benefit discipline, date of treatment, repayment rate. The expenditure indicators are: the reimbursement base of the Health Insurance and the amount refunded.

Source of Information: Système National des Données de Santé (SNDS) [23].

Data level: National level.

Date Range: 2009 to 2022.

Open data access: Publicly available [24].

Information/Contact for data request: Contact information [25].

Data by CPAM on health insurance expenditure relating to city care

Sponsor, manager or home institution: Caisse Nationale de l'Assurance Maladie (CNAM) [26].

Type of information: Health insurance fund (CPAM), type of expense item, type of benefit (care and cash benefits), type of performer (doctors by specialty, dental surgeons, medical auxiliaries, analysis laboratories, pharmacists, etc.), type of prescriber, date of treatment, repayment rate, type of risk covered (illness, maternity, accident at work and occupational disease). The expenditure indicators are: the reimbursement base of the Health Insurance, the amount reimbursed, excess fees for healthcare professionals, the count of acts carried out, and the coefficients invoiced.

Source of Information: Système National des Données de Santé (SNDS) [27].

Data level: CPAM level.

Date Range: 2010 to 2021.

Open data access: Publicly available [28].

Information/Contact for data request: Contact information [29].

Data by CPAM on health insurance expenditure relating to private health establishments

Sponsor, manager or home institution: Caisse Nationale de l'Assurance Maladie (CNAM) [30].

Type of information: Health insurance fund (CPAM), department and region of residence of the beneficiary, type of expense item, type of service, type of establishment, establishment category, benefit discipline, date of treatment, repayment rate. The expenditure indicators are: the reimbursement base of the Health Insurance, the amount refunded.

Source of Information: Système National des Données de Santé (SNDS) [31].

Data level: CPAM level.

Date Range: 2010 to 2022.

Open data access Publicly available [32].

Information/Contact for data request: Contact information [33].

Open Medic: complete database on drug expenditure

Sponsor, manager or home institution: Caisse Nationale de l'Assurance Maladie (CNAM) [34].

Type of information: Main Anatomical Group, Therapeutic Subgroup, Pharmacological Subgroup, Chemical Subgroup, Chemical Subgroup, Pharmaceutical Specialty Identification Code, Top Generic, Generic Group, Age at the time of care, Sex, Region of Residence of the Beneficiary, Prescriber, Amount reimbursed, Refund Basis, Number of boxes delivered, Number of consumers (available only in NB_ type bases).

Source of Information: Système National des Données de Santé (SNDS) [35].

Data level: Regional level.

Date Range: 2014 to 2021.

Open data access: Publicly available [36].

Information/Contact for data request: Contact information [37].

Open Medic: additional databases on drug expenditure

Sponsor, manager or home institution: Caisse Nationale de l'Assurance Maladie (CNAM) [38].

Type of information: Main Anatomical Group, Therapeutic Subgroup, Pharmacological Subgroup, Chemical Subgroup, Chemical Subgroup, Pharmaceutical Specialty Identification Code, Top Generic, Generic Group, Age at the time of care, Sex, Region of Residence of the Beneficiary, Prescriber, Amount reimbursed, Refund Basis, Number of boxes delivered, Number of consumers (available only in NB_ type bases).

Source of Information: Système National des Données de Santé (SNDS) [39].

Data level: Regional level.

Date Range: 2014 to 2021.

Open data access: Publicly available [40].

Information/Contact for data request: Contact information [41].

Open PHMEV: complete database on hospital prescriptions for drugs delivered in the community

Sponsor, manager or home institution: Caisse Nationale de l'Assurance Maladie (CNAM) [42].

Type of information: Main Anatomical Group, Label ATC1, Therapeutic Subgroup, ATC2 label, Pharmacological Subgroup, ATC4 label, Chemical Subgroup, ATC3 label, Chemical Subgroup, ATC3 label, Label CIP13, Top Generic/Biosimilar/Princeps/Reference, Generic Group, Age range, Sex, Establishment Category, Region of the establishment of the AP-HP and the Red Cross; Region of the establishment of the managing establishment otherwise, Geographic Finess number for the AP-HP and the Red Cross; No legal Finess otherwise, Top establishment according to availability Age group: 0 no; 1 yes, Top establishment according to availability Gender: 0 no; 1 yes, Number of boxes, Amount reimbursed, Refundable Amount.

Source of Information: Système National des Données de Santé (SNDS) [43].

Data level: Regional level.

Date Range: 2014 to 2021.

Open data access: Publicly available [44].

Information/Contact for data request: Contact information [45].

Open PHMEV: regional database on hospital prescriptions for drugs delivered in towns

Sponsor, manager or home institution: Caisse Nationale de l'Assurance Maladie (CNAM) [46].

Type of information: Information about reimbursement of drugs prescribed by public establishments and Espic (private health establishments of collective interest) and dispensed in community pharmacies.

Source of Information: Système National des Données de Santé (SNDS) [47].

Data level: Regional level.

Date Range: 2014 to 2021.

Open data access: Publicly available [48].

Information/Contact for data request: Contact information [49].

Open Statins: comprehensive database on statin spending

Sponsor, manager or home institution: Caisse Nationale de l'Assurance Maladie (CNAM) [50].

Type of information: Main Anatomical Group, Therapeutic Subgroup, Pharmacological Subgroup, Chemical Subgroup, Chemical Subgroup, Pharmaceutical Specialty Identification Code, Top Generic, Generic Group, Age at the time of care, Sex, Region of Residence of the Beneficiary, Prescriber, Amount reimbursed, Refund Basis, Number of boxes delivered, Number of consumers (available only in NB_ type bases).

Source of Information: Système National des Données de Santé (SNDS) [51].

Data level: Regional level.

Date Range: 2014 to 2021.

Open data access: Publicly available [52].

Information/Contact for data request: Contact information [53].

Open Statins: additional bases on statin expenditure

Sponsor, manager or home institution: Caisse Nationale de l'Assurance Maladie (CNAM) [54].

Type of information: Main Anatomical Group, Therapeutic Subgroup, Pharmacological Subgroup, Chemical Subgroup, Chemical Subgroup, Pharmaceutical Specialty Identification Code, Top Generic, Generic Group, Age at the time of care, Sex, Region of Residence of the Beneficiary, Prescriber, Amount reimbursed, Refund Basis, Number of boxes delivered, Number of consumers (available only in NB_ type bases).

Source of Information: Système National des Données de Santé (SNDS) [55].

Data level: Regional level.

Date Range: 2014 to 2021

Open data access: Publicly available [56].

Information/Contact for data request: Contact information [57].

Registries

Death registry (CepiDC)

Primary purpose: A complete registry of medical causes of death in France.

Sponsor, manager, or home institution: Center for Epidemiology on the Medical Causes of Death (CépiDC) [58].

Data level: Patient level. Open data is available at the Regional and National level.

Collected information: Complete database: Patient name, address, date of birth, sex, date and time of death, medical component that includes the sequence of morbid events that led to death from the immediate cause to the underlying cause of death as well as the comorbidities, factors or physiological conditions that contributed to the death but not directly involved in the sequence of events described before. Open database: Sex, age, and cause of death.

Number of records: Unknown.

Data source: Death certificates issued in the country.

Cancer areas of interest: Malignant tumor of the lip, malignant tumor oral cavity and pharynx; malignant tumor of the esophagus; of the stomach; malignant colon tumor; malignant tumor of the rectum and anus; malignant neoplasm of the liver and intrahepatic bile ducts; malignant tumor of the pancreas; malignant tumor of the larynx, trachea, bronchi, and lung; malignant melanoma of the skin; malignant breast tumor; malignant tumor of the cervix; malignant tumor of other parts of the uterus; malignant tumor of the ovary; malignant tumor of the prostate; kidney malignancy; malignant bladder tumor; malignant neoplasm of lymphatic and hematopoietic tissues; other malignant tumors; other tumors.

Open data access: Partially publicly available [59]. Instructions to request data for restricted content [60].

Information/Contact for data request: Contact information [61].

Databases for Clinical Trials, Surveys and Biobanks

Epidemiology Portal of France

[62]

Primary purpose: Catalog of individual French health databases to facilitate the development of research and public health.

Sponsor, manager or home institution: Inserm [63].

Type of databases: Administrative bases, morbidity registries, cohort studies, longitudinal studies, case-control studies, cross-sectional studies. Includes but is not limited to cancer databases.

Database information: Identification, medical domain, health determinants, scientific manager, collaborations, funding, database governance, database type, origin of participation recruitment, primary objective, type of population, year of first and last collection, database size, base activity, type of data collected, clinical trials details, administrative details, methodology, validation, and access.

Open data access: Partially publicly available. Check "Type of bases" [64]. Instructions to request data for restricted content [65], search for the relevant database and check "Valuation and Access" section.

Information/Contact for data request: Contact information [66].

Clinical Practices Guidelines

Institut National du Cancer Guidelines

Sponsor, manager or home institution: Institut National du Cancer.

Primary purpose: To define good practices and ensure the quality of care for cancer patients by producing and labeling national benchmarks and recommendations for healthcare professionals.

Type of information: Common good practices for the management of all cancers, pain and therapeutic management, diagnostics, treatments and care recommendations.

Access to information: List of guidelines [67].

Cancer-related Patient Associations and Resources

Patient Association: The Léon Bérard Center Volunteers Association

Primary purpose: To provide support, comfort, and companionship to patients and their families through various activities such as welcoming, listening, offering refreshments, and being present during hospitalization.

Information: Contact information [68].

Patient Association: ELLyE - Ensemble Leucémies Lymphomas Espoir

Primary purpose: To represent and support patients and their relatives affected by lymphomas, chronic lymphocytic leukemia, and Waldenström's disease, while actively participating in regulatory bodies and building a national network for advocacy and action.

Information: Contact information [69].

Patient Association: Belle et Bien

Primary purpose: To enhance the well-being and quality of life of individuals throughout France by providing beauty services and support through the dedicated work of their professional volunteers.

Information: Contact information [70].

Patient Association: Vivre comme avant

Primary purpose: To ensure that no woman faces breast cancer without support, providing companionship, encouragement, and hope throughout the course of hospitalization, treatment, and beyond, with the aim of helping them achieve a satisfactory quality of life after the illness.

Information: Contact information [71].

Patient Association: The IAS du Lyonnais

Primary purpose: To support ostomates and their loved ones, promote equitable care, provide information and assistance regarding ostomy and appliances, raise awareness about the challenges faced by ostomates to healthcare decision-makers, and support prevention and screening efforts.

Information: Contact information [72].

Patient Association: Les Mutilés de la voix

Primary purpose: To provide support, assistance, and reassurance to laryngectomees, while challenging the perception of being mutilated, through activities such as visiting patients, training healthcare professionals, and creating a welcoming environment at their premises.

Information: Contact information [73].

Patient Association: Lymphedema Rhône-Alpes

Primary purpose: To establish a network of support, information, and sharing among individuals affected by primary or secondary lymphedema, with the involvement of health professionals and lymphedema specialists.

Information: Contact information [74].

Patient Association: HNPCC Lynch

Primary purpose: To support families affected by Lynch syndrome by promoting research, disseminating research findings, advocating for prevention measures, providing support and information to families, and raising awareness among the public and healthcare professionals about this hereditary predisposition.

Information: Contact information [75].

Patient Association: Le Comité du Rhône de la Ligue nationale contre le cancer et les comités départementaux

Primary purpose: To fight against cancer on multiple fronts by conducting research, promoting prevention, providing support and accompaniment to patients and their loved ones, and mobilizing society for the cause.

Information: Contact information [76].

Patient Association: Mon Réseau Cancer

Primary purpose: To provide a social network platform for patients with breast, lung, colorectal, or gynecological cancer, and to raise awareness and promote the network's benefits when requested.

Information: Contact information [77].

Patient Association: Europa Donna Lyon

Primary purpose: To bring together women affected by breast cancer, their loved ones, and healthcare professionals, providing support, communication, information, and an exchange platform to share experiences and promote awareness of their actions and initiatives.

Information: Contact information [78].

Patient Association: JAMALV

Primary purpose: To provide a volunteer companion who offers attentive and respectful support to individuals in pain, acting as a valuable intermediary for caregivers and family members through their availability, active listening, and non-judgmental approach towards the patient.

Information: Contact information [79].

Patient Association: On est là

Primary purpose: To create spaces for exchange and support among young people affected by cancer, fostering connections and breaking isolation through meetings, sponsorship programs, discussion groups, participation in events like the Heroes' race, collaborations with the Cheer-Up Federation, anniversary celebrations, and providing training to healthcare teams focused on young adult adolescents.

Information: Contact information [80].

Patient Association: The Neurofibromatosis and Recklinghausen Association

Primary purpose: To provide support and listen to patients and their loved ones, guide them towards medical teams, inform them about the latest research developments, disseminate information to the medical field and the general public, raise funds for information and research, and support research by participating in studies and funding projects.

Information: Contact information [81].

Patient Association: CERHOM

Primary purpose: To bridge the gap between the medical field and patients by utilizing the firsthand experiences of patients or former patients to provide support, guidance, and empathy to new patients, with the aim of making their burdens lighter through exchanges, contacts, and meetings.

Information: Contact information [82].

Patient Association: HOPE

Primary purpose: To support and accompany women throughout their cancer journey by providing equine therapy, artistic workshops, and Discovery Days that help them explore their emotions, rebuild their paths, and regain a sense of empowerment.

Information: Contact information [83].

Patient Association: Lyonnes de Tatooine

Primary purpose: To improve the quality of life for women with cancer through various actions, including physical activities, mind-body practices, and social support, aiming to get them moving again and promoting their physical and emotional well-being.

Information: Contact information [84].

Patient Association: TGCT Support France

Primary purpose: To gather and disseminate accurate and up-to-date information about the pathologies "tumeurs ténosynoviales à cellules géantes" (giant cell tumors of the tendon sheath) and related conditions. They aim to provide guidance, assistance, and support to diagnosed patients and promote initiatives to improve their quality of life, research, participation in clinical trials, and other actions benefiting the patients.

Information: Contact information [85].

Compilation: ESMO Patient Guides

Sponsor, manager or home institution: European Society for Medical Oncology.

Primary purpose: To translate complex medical language into understandable information for patients.

Available guides: Cancer Treatment During the COVID-19 Pandemic; Immunotherapy Side Effects and Their Management; Personalized Medicine; Survival; Colorectal Cancer; Endometrial Cancer; Stomach Cancer; Gliomas; AML; CML; Follicular Lymphoma; Bone Sarcomas; Non-Small Cell Lung Cancer (NSCLC); Head and Neck Cancer; Soft Tissue Sarcomas.

Type of information: Information on each guide varies for each cancer type. Generally, guides provide definitions, explanations of causes, diagnosis, treatment, treatment options, care after treatment, among others.

Access to information: List of guides [86].

Latest Policymaking Initiatives

CNAM Studies and Data

Primary purpose: Offer access to publicly available databases and reports made by CNAM.

Sponsor, manager or home institution: Caisse Nationale de l'Assurance Maladie (CNAM) [87].

Type of information: Health reports and databases that include but are not limited to cancer reports and databases.

Open data access: Publicly available [88].

Information/Contact for data request: Contact information [89].

Report: Cancer Panorama in France

Sponsor, manager or home institution: Institut National du Cancer.

Primary purpose: To provide a concise overview of the latest essential data on major cancers in France, including incidence, mortality, survival, etc., as well as preventive and treatment actions that can be taken before, during, and after the disease.

Type of information: Cancer incidence; New cases of cancer; Cancer annual evolution; Numbers of deaths due cancer; Survival rete; Cancer prevalence; Risk factors; Participation in organized cancer screenings; Number of cancers detected by screenings; Number of hospitalizations in connection with the diagnosis, treatment or monitoring of cancer.

Data level: National level.

Access to information: Access Information [90].

Report: EU Country Cancer Profile 2023

Sponsor, manager or home institution: OECD and European Commission.

Primary purpose: To provide reliable data on cancer prevention and care, identifying trends, disparities, and inequalities among EU Member States and regions to guide interventions under Europe's Beating Cancer Plan.

Type of information: National cancer burden; Cancer incidence and mortality; Risk factors for cancer; Early detection programs (screenings); Cancer care performance, The impact of COVID-19 on cancer care.

Data level: National level.

Access to information: Access Information [91].

Quality of Life and Palliative Care Research

List of Articles: Quality of Life [92] and Palliative Care [93].