Neda
MILEVSKA-KOSTOVA
background
objectives
methodology
activities
resources
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:
(1)
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.
(2)
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
(1)
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:
a) 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.
b) 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.
c) 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.
(2)
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.
(3)
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.
Resources
- Allin S (ed.), Making decisions on public health: a review of eight countries”, World Health Organization 2004
- Bloom SW, “The Word as Scalpel: A History of Medical Sociology”, Oxford University Press, 2002
- “Bolesnik: prava i obaveze”, Hrvatski Lijecnicki Zbor, 2005
- Census 2002, General data, State Statistical Office of the Republic of Macedonia
- Constitution of Romania, 1991. Title II: Fundamental Rights, Freedoms and Duties. available at: http://www.cdep.ro/pls/dic/act_show?ida=1&idl=2&tit=2#t2c2s0a26 (accessed December 2005)
- de Cruz P, “Comparative Healthcare Law”, Cavendish Publishing Ltd, 2001
- Farmer R, Lawrenson R, “Epidemiology and Public Health Medicine”, Blackwell Publishing, 2004
- “Global and International Health”, A Special Supplement to Health Services Research, December 2004 (vol.39, no.6)
- Horton R, “Health Wars”, New York Review Books, 2003
- Hrvatski lijecnicki zbor, Kodeks medicinske etike i deontologije, 2002.
- Last JM, “A Dictionary of Epidemiology”, Oxford University Press 2001
- Lin V, Gibson B, “Evidence-based health policy”, Oxford University Press 2003
- Magee M, “Health Politics: Power, Populism and Health”, Spencer Books, New York 2005
- McKee M (ed.), “Health policy and European Union enlargement”, Open University Press 2004
- National Association for Welfare of Children in Hospital. A charter for children in hospital. Lancet 1984;2(8415):1350
- "Pacienti vo Makedonija so prava po evropski standardi”, MIA-AIDS, 2004
- Reich MR (ed.) “Public Private Partnerships for Public Health”, Harvard University Press, 2002
- Saltman RB et al (eds.), “Critical Challenges for Health Care Reform in Europe”, Open University Press, 1999.
- Statistical Yearbook 2002, State Statistical Office of the Republic of Macedonia
- Turkovic, K, The right to informed consent according to Croatian Act on Protection of Patients’ Rights, in “Bolesnik: prava i obaveze”, Hrvatski lijecnicki zbor, Zagreb 2005.
- Walt G, “Health policy: an introduction to process and power”, 7th ed. Witwatersrand University Press, 2004
- WBI Development Studies, “Principles of Health Economics for Developing countries”, WBI
- Whitehead Margaret, The Health Divide in “Inequalities in Health”, 2ed, Penguin Books, 1992.
- Zakon za zdravstvenata za{tita (“Sl.vesnik na RM”, broj 38/91,46/93 i 55/95)