Start of Project Implementation Patients’ Rights as a Policy Issue in Southeast Europe (2004-2006)

In the transition societies, the issue of patients’ rights has been widely discussed among the medical professionals, policy makers and general public for long time but still without consistent argumentation. The European Charter of Patients’ Rights regulating the basic patients’ rights currently at risk, is setting high standards for the treatment of European patients. The project Patient Rights as a Policy Issue is aimed at analysis of the patients` rights policies and the level and quality of their implementation in different national contexts, as well as in the light of different ethnical groups, especially focusing on the Roma population, as the most disadvantaged and socially excluded, and the one suffering largest inequalities and discrimination.

Background

The common health and social policy in the EU, despite the differences of the national health systems, is placing the same rights of patients, consumers, users, family members, weak populations and ordinary people at risk. As described in the Preamble of the European Charter of Patients` Rights, �financial constraints, however justified, cannot legitimize denying or compromising patients’ rights. The Nice Charter of Fundamental Rights will soon be part of the new European constitution. It is the basis of the declaration of the fourteen concrete patients’ rights currently at risk: the right to preventive measures, access, information, consent, free choice, privacy and confidentiality, respect of patients’ time, observance of quality standards, safety, innovation, avoidance of unnecessary suffering and pain and personalized treatment, and the right to complain and to receive compensation�.

This Charter aimed at fortifying the introduction of patients` rights policies and reinforcing the level of their implementation in different national contexts, can also be used as a tool for the harmonization of national health systems of both the EU member-states and aspirants for EU accession, as part of the improvement of the freedom of movement within the EU and especially the enlargement process.

In most of the countries of Central and Eastern Europe prior to the transition there was no single legislation regulating the rights of patients, but those rights were stipulated in several healthcare and healthcare insurance laws and bylaw documents. One of the activities of the new EU member-states during the process of preparation for accession in the EU was the adjustment of the health care legislation towards the European legislation and standards. Such was the case with Hungary that in 1997 enacted the New Health Care Act, in which most of the patients` rights are regulated, such as: the right to healthcare, right to be treated with dignity, right to information, right to refuse treatment, right to information privacy, right to leave the health care institution, right to complaint, right to die with dignity, right to participation in decision-making in health care, etc.

Yet, this process has not been completely undergone by the countries aspirants for EU membership. Among them, the Republic of Macedonia is undergoing the process of reforming the health care and public health systems, but still struggling with defining the most suitable healthcare and healthcare insurance model. Therefore it is an inevitable necessity to undertake analysis of the existing related legislation in these countries that have been going through the similar processes of economic and political transition, which by all means affect the healthcare system, treatment of patients, patients` rights and citizens` rights in general.

On the other hand, the dramatic changes that have taken place in the past decade in Central and Eastern Europe, have caused the large inequalities in health to grow even bigger, not only between but also within the countries in the region. This statement can be well backed up with the national health statistics, which �give a stark illustration of the effect of economic crisis and widespread pollution on the health of whole populations are reveal a growing health divide�.

Goals and Objectives

The project Patient Rights as a Policy Issue is aimed at analysis of the patients` rights policies and the level and quality of their implementation in different national contexts, as well as in the light of different ethnical groups, especially focusing on the Roma population, as the most disadvantaged and socially excluded, and the one suffering largest inequalities and discrimination.

Thus, the set of goals of this project can be divided mainly into two groups:

Comparative analysis of the existing legislation and policies, their compliance with the common health and social policies of the EU, as part of the harmonization of their legislation with the EU legislation towards the ultimate goal of EU membership. In this process, learning from the experiences of the new EU member-states can be a very powerful tool for overcoming the challenges, but one should always bear in mind the specificities of the national, political, social and economic context in each given country being analyzed.
Evaluation of the level and quality of implementation of the patients` rights legislation, especially focusing on the Roma population as the most marginalized ethnical group in the countries in the region. In this process, the project will offer a comparative study on the experiences and conditions in the countries in the region, especially Macedonia, Croatia, Romania and Hungary – chosen based on the different EU membership status.

Methodology

Standard methods of analyzing data by gathering existing documents and statistics on ethnicity and health, especially regarding access to special health services and reimbursements; interviews with patients; healthcare professionals and other participants in the process of provision of healthcare and questionnaire surveys of patients and patients` families will be utilized. Part of the surveys will be performed in Roma communities to explore their perceptions of whether their rights as patients are respected, compared to members of the majority population. Organizing scientific discussion or round table with relevant authorities and representatives in the field of health care and medical and legal scientific circles is also considered as possibility.

Activities

Analysis of the existing legislation that regulates the rights of patients in Macedonia, Croatia, Romania and Hungary, including the analysis of the compliance with the EU regulations and ratified international acts and documents. The provision, protection and promotion of the patients` rights is proposed to be analyzed in the following 3 clusters:
- Quality of Life / Social rights of patients This cluster of patients` rights includes the rights to economic assistance, privacy, confidentiality, security of person and property, recognition of individuality, access to religious services, freedom of communication in the language of choice, etc.
- Quality of Care / Therapeutic rights of patients Therapeutic rights emphasize the right of patients to be involved in treatment decisions. Patient involvement in treatment decisions involves the right to be fully informed of treatment options, consideration of therapeutic alternatives, second medical opinions, choice of caregiver, information about treatment, etc.
- Right to active citizenship This cluster will analyze and elaborate on the rights of every citizen to organize and participate in activities of general interest, right to perform advocacy activities and the right to participate in the process of policy-making in the area of health.
Analysis of the level and quality of the policy implementation in different national contexts, placing special focus on the Roma population, as the most disadvantaged and socially excluded, and the one suffering largest inequalities and discrimination.
Identification and formulation of proposals and recommendations for development or introduction of legislation towards improvement of the patients` rights, using the experiences of EU and especially of the new EU member-states, which have been undergoing the similar processes of economic and political transition as the EU membership aspiring countries chosen for analysis. The recommendations made shall incorporate specific measures/mechanisms for improvement of access of the Roma population to health care and social and health benefits, which are part of the legally assured patients` rights.