2.9 Patient empowerment
The principles of health democracy (démocratie sanitaire) were instituted by the 2002 Act on Patients’ Rights and Quality of Care (Loi No. 2002–303 du 4 mars 2002 relative aux droits des malades et à la qualité du système de santé), which included improved representation of health system users; the right of patients to directly access their full medical records; and principles of professional liability and compensation for victims of medical malpractice. However, since then, public debate has focused on how to better account for the expectations of health care users.
2.9.1 Patient information
In recent years, the government has taken the initiative in developing health information websites for the general public. Since late 2013, two databases provide health care consumers with searchable data: one includes all drugs available in the French market (Base de données publique des médicaments; http://base-donnees-publique.medicaments.gouv.fr/) and the other, Scope Santé (http://www.scopesante.fr), is a website set up by the HAS to provide data on quality and safety indicators for all public and private hospitals. The public also has access to the applicable official tariffs for physicians on the official SHI website (http://www.ameli.fr/).
In terms of freedom of information, public access to documents, including medical records, is provided through the Commission on Access to Administrative Documents (Commission d’accès aux documents administratifs), an independent administrative authority that provides opinions on requests for information. However, even with a favourable opinion from the Commission, national and regional authorities comply with only approximately half of the requests for access to documents (CADA, 2012).
2.9.2 Patient choice
France is generally perceived as a country with extensive patient choice. Indeed, the public health code states that a patient’s right to choose a health professional and hospital is a fundamental principle of France’s health law. Implementation of a gatekeeping function has not significantly limited that right, as patients may designate the treating physician of their choice and, once a specialist referral is made, may visit any professional in that specialty even if it is not the specialist identified by the gatekeeper. In addition, patients can always visit another GP or a specialist without referral even though they are entitled to lower levels of reimbursement if they do so. Nonetheless, real choice, particularly with respect to specialists, may be undermined by extra-billing and geographical disparities.
2.9.3 Patient rights
Patient information on the process of care is mandated by law and must be provided in understandable terms. A number of tools exist to facilitate awareness of patient rights, including:
- Charter of Rights and Freedom (La charte des droits et des libertés), which states the principles that apply to all hospitalized patients, including non-discrimination, respect of dignity and privacy, right to information, protection, informed consent and autonomy;
- information booklet provided to every person admitted to hospital;
- specific “admission contract” that must be given to individuals who are admitted to an institution for an extended period of time (over two months), signed by the patient or his representative; and
- provision of assistance from a “qualified person” to help to enforce patient rights.
Courts have repeatedly ruled that a signed document is neither necessary nor sufficient to meet the obligation of informed consent because physicians could simply ask a patient to sign the form without providing sufficient information. The recommended form of information and consent is by writing in the patient’s medical chart, which the patient may access, the exact information process that took place before the procedure. Nonetheless, many professional organizations continue to use information leaflets that patients must sign before undergoing an invasive procedure.
Patients are often unaware of their rights. A 2011 survey undertaken on behalf of the ministry in charge of health found that 70% of those questioned did not know their rights within the health context, including 44%, who believed that they were required to obtain their doctor’s authorization in order to access their health records (Ministry in charge of Health, 2011). To address this lack of awareness, the minister in charge of health, in conjunction with the Rights Advocate (Défenseur des droits), an independent constitutional authority charged with protecting rights and liberties and promoting equality, developed a comprehensive guide covering the major aspects of health care: access to care, the patient as actor in his or her health, quality of care, information regarding end-of-life issues and recourse and representation in the event of complaints against hospitals or health professionals (Ministry in charge of Health, 2014b).
The 2005 Act for Equal Rights, Access, Participation and Citizenship for Handicapped Persons (Loi pour l’égalité des droits et des chances, la participation et la citoyenneté des personnes handicapées) requires that all establishments open to the public, including hospitals and health professionals’ offices, be accessible to people with disabilities by no later than 1 January 2015. By 2014, only 30% of the establishments covered by this Law had met their obligations. A new voluntary measure, the programmed accessibility agenda (Agendas d’accessibilité programmée), provides extended deadlines of one to six years to entities that agree to make all of the required changes within a defined time frame.
2.9.4 Complaint procedures
The 2002 Patients’ Rights and Quality of Care Act enumerated the general rules for patient complaint and compensation procedures, which differ depending on the setting in which care is delivered. It also established the possibility for patients to obtain compensation without demonstrating that there was an error either by a health professional or by an institution and simplified the procedure for patients pursuing claims in court (for more details see section 2.5.6 in Chevreul et al., 2010).
In public hospitals, the first step of a patient’s complaint (before a formal case is brought against the hospital) is addressed through a conciliatory procedure involving the hospital mediator (usually a senior physician) and the patient or the patient’s family.
Patients with complaints against self-employed doctors (office-based or working in private profit-making hospitals) may bring a case against doctors in the courts of justice and may bring a case to the physician’s professional association. The physicians’ associations are qualified to take disciplinary sanctions against their members.
2.9.5 Public participation
Patients and their representatives may participate in the CRSA in defining public health priorities at the regional level, including development of the PSRS (see section 2.3.7). Nonetheless, patient participation remains insufficient, although it is stronger at the hospital level.
Therefore, measures to improve patients’ participation are part of the planned 2015 Health Reform Law (see section 6.2) by putting representatives of patients on the board of each health agency and enlarging hospital patients’ commissions, which will be consulted on the hospital quality and safety policy and informed of adverse events.
2.9.6 Patients and cross-border health care
Unanticipated emergency care for French SHI beneficiaries travelling outside of France, including outside the EEA, may be reimbursed at the usual SHI tariffs upon presentation of the bills and justification of the urgency of the medical need. Within the EEA and Switzerland, medically necessary care arising in the context of short stays (holidays, professional travel, language study, etc.) is facilitated by European Health Insurance Card (carte européenne d’assurance maladie), which ensures that care is provided under the same conditions as for beneficiaries in that country.
For planned ambulatory care in a foreign country covered by regulation or agreement, the patient is not required to seek pre-authorization from the SHI fund and normally would pay for the services and then submit the bills for reimbursement based on the usual SHI tariffs. For scheduled hospitalizations and treatments involving major equipment (MRI, PET, etc.), the patient must seek authorization from the SHI fund, explaining the nature and reasons for seeking treatment outside of France. Hospitalizations are usually authorized unless it involves a treatment not covered by SHI.
In 2012, France reimbursed €583 million for cross-border health care, which constitutes a 43% increase over 2011 (Centre for European and International Liaisons for Social Security, 2012). Care provided for French SHI beneficiaries in Belgium, Spain and Portugal accounted for two-thirds of the cross-border reimbursements.
A national union of accredited associations representing users of the health system (Union nationale des associations agréés d’usagers du système de santé, UNAASS) has been created on the 21 March 2017, as planned in the 2016 Health Reform Law (Loi n°2016-41 du 26 janvier 2016 de modernisation de notre système de santé). This union will be in charge of: leading a network of associations of representatives of health system users from all the French territory, training those representatives and providing advice to decision makers on health policies through the executive board of the union. It will also be entitled to defend its interests and those of French citizens in court. The union will be financially supported by the National Fund for Health Democracy, created within the general statutory health insurance scheme (Caisse nationale d’assurance maladie des travailleurs salariés, CNAMTS). Regional delegations will be progressively created and will work closely with regional health agencies. So far, 73 associations have joined this union.
More information (in French): http://social-sante.gouv.fr/actualites/presse/communiques-de-presse/article/marisol-touraine-cree-l-union-nationale-des-associations-agreees-d-usagers-du;
“The right to be forgotten”, which was one of the flagship measures of the 2016 Health Reform Law (Loi n°2016-41 du 26 janvier 2016 de modernisation de notre système de santé), has been implemented in two new decrees (decree n°2017-147 of February 7th, 2017 and decree n° 2017-173 of February 13th, 2017). According to this measure, long-term cancer and hepatitis C survivors do not have to disclose their past medical history to insurers and loan companies after a fixed number of years post-treatment, in order to avoid higher premiums, warranty exclusions or refusals. This fixed period of time will amount to ten years for disorders which affect adult patients and to five years for those who affect minor patients, with some reductions for localised disorders or disorders treated at an early stage. With this measure, France is the first country in Europe to adopt an anti-discrimination act regarding access to insurance and loans for cancer and hepatitis C survivors.
More information (in French):