2.9. Patient empowerment

2.9.1. Patient information

Act CLIV of 1997 on Health made a systematic and elaborated move to address patient information, specifying in detail rights that were previously incorporated in the legal obligation of medical professionals or that could be deduced from judicial practice (Sándor, 1997) (1997/20). According to the Act, patients have the right to complete and detailed information from health care providers, particularly on their health status; on the recommended interventions with the alternatives, including clarifying the possible benefits and drawbacks; and on the decision rights of the patients regarding treatment. This should be done by the provider in understandable way, taking into account the age, schooling and mental capability of the patient, and ensuring a translator is provided if necessary. Also, the patient can refuse to be informed, although the precondition for any medical intervention is that the patient should be properly informed and give prior consent to the intervention in written form or as implied through their conduct.

Moreover, the Act stipulates that patient documentation should be carefully maintained by the medical provider, while giving the right of disposal of the data in the documentation to the patients – who have the right to read and obtain a copy of the documentation at their own expense – and guaranteeing the right to privacy (1997/20). To provide patients and the wider public with health information in meaningful way has taken effective form with the establishment of a web and call centre-based health information source for both patients and health professionals, but there are only few health promotion programmes that are aimed at increasing the health literacy of the population. Unfortunately, there is no systematic assessment of the accessibility and the usefulness of the available information, as well as to what extent the population has clear sense of the benefits to which they are entitled.

2.9.2. Patient choice

Since the HIF operates as single statutory structure at the national level, there is no competition between purchaser organizations. However, Act CLIV of 1997 on Health acknowledges and emphasizes the right of patient autonomy through which patients have, first of all, the freedom to decide whether they accept or refuse certain medical services (1997/20).

Moreover, the right of choice is given to patients with regard to some of the medical services financed by the NHIFA. Since 1992 people are allowed to choose a family doctor freely, with the restriction that they may change only once a year. Family doctors are not allowed to refuse patients who live in their primary care district, but are offered the choice of not accepting applicants from other districts (1992/3, 1997/9). Similarly, patients can contact specialists from a variety of disciplines without referral. The patients can choose to be referred to other health care providers than the providers originally assigned for the treatment, provided that the chosen provider is willing to accept the patient by stating this in written form. The chosen provider has to accept the patient unless there is no financed free capacity, or if the provided care would endanger the care of the patients who are assigned within the catchment area of the given provider. Also, patients can request other health professionals to treat them, but the providers can charge extra fee for this service (1997/9). See sections 5.3 and 5.4 for more details on primary and specialist care.

Co-payments are also due when non-emergency specialist services are obtained without referral from an authorized medical doctor, normally the family doctor; or patients choose to go to a provider other than the one they were referred to; or, finally, patients want to receive more services than the doctor prescribed (1997/9, 1997/18). See subsection Depth of coverage in section 3.3.1 for more details.

At health policy level, knowledge is limited on: how patients exercise their choices; whether the levels of information facilitate choice; and how the current level of choice affects equity and efficiency.

2.9.3. Patient rights

The chief significance of Act CLIV of 1997 on Health came from its declaration of patient rights, which had not been previously regulated in a comprehensive manner. The Act also established the institution of patient rights representatives and the institution of arbitration for resolving disputes between patients and health care providers (1997/20, 2000/9).

Following the Declaration on the Promotion of Patients’ Rights in Europe by WHO in 1994, the approved Act CLIV of 1997 on Health incorporated these rights extensively, together with the patient’s obligation regarding cooperation with the providers and respect for the rights of the other patients as well as the medical professionals. The chapters of the defined rights frame one of the core concepts of the law. Some of these rights have been discussed above in subsections 2.9.1 and 2.9.2. Partly repeating them here, the following rights were established by this law: the right to provision of care; the right to human dignity; the right to maintain personal contacts while under treatment in hospital; the right to stop or refuse treatment and leave the medical institution providing the care; the right to autonomy and to give informed consent; the right to get to know the patient file; the right to privacy and the right to submit a complaint to the providers or to the owner of the providers (1997/20).

To enforce these rights, the institution of patient representatives was created by Act CLIV of 1997 on Health, with the aim of supporting patients in accessing their medical files and formulating their complaints, to represent the patient for the providers and to inform medical professionals of the change of the regulation regarding patient rights (1997/20), but the new institutional framework started in the organization framework of the NPHMOS as of July 2000 with the implementation of the regulation of the then Minister of Health (1999/14). After the resolution of the National Assembly in 2002 (2002/2), representation of the rights of the patients and citizens participating in social welfare programmes were integrated in one public foundation, while the representatives were employed and supervised by the Foundation for the Rights of Patients, Social Service Beneficiaries and Children (2004/1). With respect to hospitals, the representative has the obligation to work one full day in the hospital per week and also to be available for consulting hours once a week in the regional office of the Foundation (2004/1). According to the report of the Foundation, there were 52 patients’ right representatives of the Foundation covering 144 hospitals and 29 outpatient providers. The report evaluated the cooperation with the management of the providers as effective, and the visibility of the contact information of the representative is 98% (Foundation for the Rights of Patients, Social Service Beneficiaries and Children, 2009). The representatives work mostly with case management in 45% of their working hours and with patient information in 20%. The Foundation handled 11 297 complaints in 2009, most of which addressed breaches of the right to health care provision but there is an increasing trend of breaches of the right to human dignity (Foundation for the Rights of Patients, Social Service Beneficiaries and Children, 2009).

These findings were confirmed by the observation of the members of the National Health Council, who concluded that the current implementation of the regulation should be improved and that the most critical areas are the right to human dignity, the right to information and the right to proper care (National Health Council, 2010). They called for the evaluation, development and restructuring of the institutional mechanism of patient rights.

2.9.4. Complaint procedures

In addition to patient rights representatives, there are parallel procedures for handling patients’ complaints. Act CLIV of 1997 on Health introduced the institution and procedures of arbitration via so-called arbitration councils to resolve disputes between patients and health care providers without going to court (1997/20); the procedure was regulated in detail in 2000 (2000/9).

The complaint of the patients must be investigated by the provider, which must inform the patient on the findings within a maximum of 30 days, and which must regulate the procedure at the institutional level (1997/20). Furthermore, patients can turn to the so-called councils or the chambers of medical professionals that apply professional/ethical procedures when they examine cases of negligence, and can apply their own disciplinary measures. Also, it is possible to submit complaints to the departments of the State Secretariat for Healthcare or to turn to the Parliamentary Commissioner for Civil Rights or, finally, to initiate criminal proceedings. Currently, it is unknown to what extent patients use these alternative mechanisms.

2.9.5. Public participation

Patient associations are growing in number and influence. In 2000, there were over 80 organizations active in various fields of health and health care (Lengyel, unpublished data, 2009). Their participation has been institutionalized in waiting list committees, in the National Health Council and in hospital supervisory councils (1997/20, 1998/24, 1998/25, 1998/28).

Members of the National Health Council have said that it is important to create closer links between government bodies concerned with health, patients’ associations and patient representatives (National Health Council, 2010), whose opinion is only weakly represented in the system, partly because the traditionally self-regulatory aspects of the archetypal SHI system do not exist in Hungary. The 2638 foundations and associations active in health care in Hungary in 2005 represented only 4.7% of the total number of non-governmental organizations (NGOs) working in Hungary that year (Péntek, 2009).

There have been several surveys on public satisfaction that investigated the level of satisfaction with the medical treatment available in the country. In 2007 the Gallup Organization, at the request of the Health and Consumer Protection Directorate-General, measured patient satisfaction across EU Member States, and the findings showed that compared both to the EU15 average (89%) and the EU27 average (83%) only 52% of Hungarians were satisfied with care received – a fairly poor outcome, with only Romania and Bulgaria lagging further behind (European Commission, 2007). For more details on user experience of the health system see section 7.3.1.

2.9.6. Patients and cross-border health care

Cross-border care and care for non-resident citizens of other EU Member States are regulated mainly on the basis of the European Commission Regulation 883/2004, which is administered within the organizational framework of the NHIFA. Using the European Health Insurance Card (EHIC), Hungarians covered by the HIF may receive medically necessary treatment for unforeseen causes free of charge while staying abroad (1997/9). Regarding planned hospital care in other countries, a prior authorization from the NHIFA is obligatory (1997/9). The possibility for this kind of service was already available in 1988 (1988/1). The treatment of non-resident citizens of other EU Member States can be provided under separate bilateral agreements (1997/9).

Patient mobility has been increasing since 2004, when Hungary joined the EU, although it is still limited both in volume and in value. In 2007 total expenditure on medical services within the framework of the patient mobility, which includes payment both for Hungarians in other countries and the prepayment to the Hungarian providers by the NHIFA for foreigners using in health care services in Hungary, was only 0.32% of total health expenditure (Lengyel, unpublished data, 2009). Since 2004, foreign third-party payers issued certification in 24 000 cases for health care costs of their members in Hungary while the NHIFA did the same for 23 600 Hungarian residents who work in other EU countries (Lengyel, unpublished data, 2009). The number of pensioners who moved to Hungary is only 5318 since Hungary’s accession. There is a decreasing trend in the number of foreign patients who pay the full cost of provided health care directly, and who come mainly from Romania, Germany and Austria (Lengyel, unpublished data, 2009)[11]. However, dental tourism is the predominant form of cross-border care in Hungary (see section 5.12 for more detail).

Between 2004 and 2008, the number of the patients who received health care using the E111 form was 13 371, the vast majority being German and Austrian residents. NHIFA expenditure on Hungarians who use care provided in other EU Member States, especially in Austria, is continuously increasing (Lengyel, unpublished data, 2009).

It is surprising that, although the measured satisfaction level with received care is fairly low, Hungarians’ motivation to travel to another EU Member State for medical treatment is very low compared with other EU countries, given all the motivating factors, such as reducing waiting times for medical treatment; receiving cheaper or better-quality care; receiving treatment from a renowned specialist; and receiving treatment that is not available at home (Lengyel, unpublished data, 2009).