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Over the years, the European Charter of Patients’ Rights has been published in different ways around Europe, here below some examples:   

 

PUBLISHED BY INSTITUTIONS

 

Patients’ Rights in the European Union

Patients Rights in the European Union immagine 

Conducted by Maastricht University, KU Leuven and the European Observatory on Health Systems and Policies. In addition, national experts from all EU Member States provided data and valuable contributions (March 2016).

This report aims to provide an overview of patients’ rights in all EU Member States, Norway and Iceland by mapping national patients’ rights legislation, soft-law, structures and enforcement procedures ensuring the rights of patients. The mapping exercise was performed from January to September 2015 providing a cross-sectional view of the patients’ rights situation in the 30 countries under study. The assessment of the patients’ rights situation covered basic individual rights, consumer- based rights and procedural rights.  It was undertaken by national patients’ rights experts by means of a survey, of which, results were presented at a workshop on September 10th, 2015 in Brussels.

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PUBLISHED BY NON-INSTITUTIONAL SUBJECTS

Patients Rights in Europe a Citizens Report immagine

Patients' Rights in Europe: a Citizens’ Report

On February 28th to March 1st 2005, at a conference held in the European Parliament, Active Citizenship Network unveiled the preliminary results of a two-year study on the implementation of patient rights within 13 European healthcare systems (2005).

The Active Citizenship Network study found that, without exception, European citizens do not have sufficient access to high-quality healthcare, medical innovation, or information about their healthcare choices. Attending the event were 140 health stakeholders (who were asked to provide feedback before Active Citizenship Network’s final report on the study is released). The project was welcomed by all, including the European Commission. A summary of the preliminary report and the discussions that took place at the February/March conference is to be found in this report.

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Patients’ Rights as a Policy Issue in South Eastern Europe

Patients Rights as a Policy Issue in South Eastern Europe

This policy paper was produced under the 2005-06 International Policy Fellowship Program and was released in July 2006.

Due to a lack of knowledge and expertise in medical law and a paternalistic concept of medicine, the rights of patients, consumers, family members and ordinary people are at risk. Inequalities in healthcare have increased significantly in the last decade in the countries of Central and Eastern Europe, not only between but within the countries of the region. This paper argues that it is necessary to examine existing legislation in these countries, where the process of economic and political transition has had an impact on the healthcare system and treatment of patients. The enforcement of patients’ rights legislation and related healthcare acts produce no results unless the appropriate system for consistent implementation is in place. These rights include not only the right to healthcare but the right to refuse treatment, the right to complain and the right to participate in decision making, all rights introduced by the European Charter of Patient’s Rights, explained in the introduction of the article. Additional problems occur within the Roma populations of Central and Eastern Europe, where lack of education and poor housing conditions are reflected in the poor health of the Roma.

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The Future of Healthcare in Europe

 The Future of Healthcare in Europe

This report was published by the Health and Social Campaigners’ News International (April 2007).

The 1st European Patients’ Rights Day was celebrated on 29 March 2007 in Brussels at the European Parliament, with over 180 delegates from 25 countries representing the interests of patients, public administration, policymakers, healthcare providers, legislators and industry stakeholders. The Head of Cabinet of the Commissioner, Mr. Philippe Brunet, opened the event and some 23 MEPs from different political groups all spoke of the importance of the existence of a European Patients’ Rights Day. The event concluded with the commitment from ACN and participating organizations to push forward for the institutionalization of the European Day, the adoption of the Charter, and campaign for its implementation in all countries along with the celebration of the 2nd European Patients’ Rights Day in all EU countries. This article represents a summary of the event.

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Patients’ Rights: Getting the perfect balance

Patients Rights Getting the perfect balance

This report was published by the Health and Social Campaigners’ News International (June 2008).

On 2008, some 120 patient representatives, healthcare providers and administrators, politicians, religious leaders and members of the legal profession from more than 20 countries gathered in the northern Italian town of Gorizia. The meeting was hosted by Active Citizenship Network. The participants had come to talk about one subject: improving the rights of patients across Europe. This report is a summary of that event and looks at the groundswell of opinion on the subject of patients’ rights, examining why the increasing mobility of patients across national borders has brought the topic of patients’ rights to the attention of various EU agencies. Moreover, it analyses the impact of data on the health inequities that exist across Europe, noting how these data are provoking patient-led campaigns for more uniform standards and for excellence of healthcare pan-EU. Finally, it describes international initiatives that attempt, but largely fail, to tackle the issue of patients’ rights.

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One Step Closer to Patients’ Rights

One Step Closer to Patients Rights

On April 23rd 2009, the European Parliament voted a Directive which gave EU citizens the right to seek medical care within other Member States than their own. The Directive stated that patients with a rare disease had to be given especial priority and that people requiring medical care outside the hospital setting would not need to gather any prior authorization. This cross-border patients’ rights’ Directive, which was backed by 297 Members of the European Parliament, is built upon a number of landmark judgments made by the European Court of Justice (ECJ), which established that healthcare provision is governed by the same EU rules on the free movement of goods as any other service industry.

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The European Patients’ Rights Directive: A clarification and codification of individual rights relating to cross border healthcare and novel initiatives aimed at improving pan European healthcare co-operation

One Step Closer to Patients Rights

This article was written by two Professors of the Vrije Universiteit Brussel in Brussels, Belgium, and published by Medical Law International (May 2011).
This paper undertakes a contextual analysis of the main aims of Directive 2011/24/EU of the European Parliament and of the Council of 9 March 2011 on the application of patients’ rights in cross-border healthcare, commonly known as the Patients’ Rights Directive (the PRD). Several rights of the PRD such as the “right to free choice” and the “right to information” have been included in the European Charter of Patients' Rights. The PRD concerns matters related to the prior authorization of healthcare, the reimbursement of healthcare and the removal of unjustified obstacles from doing so. This paper explores how the Directive sets out to achieve these aims and analyses it within the context of other related European Union legislation and jurisprudence in the area. Alongside this primary discussion, the PRD also introduces novel initiatives aimed at fostering cross-border cooperation between various elements of national healthcare systems.

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Citizens in Europe: Civic Activism and the Community Democratic Experiment

Chapter in which the European Charter of Patients’ Rights is cited: The European Civic Movement for Patients’ Rights

Citizens in Europe Civic Activism and the Community Democratic Experiment

 Written by Giovanni Moro. Published by Springer (2012).

This book talks about the consistency of civic activism in Europe and its role in the development of the European democratic experiment and the obstacles interfering with it. The book is divided into two parts.  The first part of the book focuses on the way in which the literature on EU governance and citizenship deals with citizen activism in public policy making. The second part discusses several empirical research projects on civic activism in Europe. This book aims, on the one hand, to bridge the academic debate to more policy-oriented debates in which active citizenship organizations and policy makers are involved. On the other hand, it aims to bridge theoretical discussion of the nature of the EU with the empirical literature based on the study of civic activism in Europe and at the national level.

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Implementation of Patient’s Rights Charter: a Report from Ministry of Health and Medical Education, Iran

Citizens in Europe Civic Activism and the Community Democratic Experiment

This article was written by Professors of the Tehran University of Medical Science in Iran and published by the Iranian Journal of Public Health (July 2013).
This paper provides a report of the strategic planning for the implementation of the European Charter of Patients’ Rights in Iran.
Physical, mental, spiritual, and social health are considered as the most important dimensions of individuals and, according to article 29 of the Iranian Constitution, their development is one of the most important commitments of the Iranian government. Accordingly, the Ministry of Health and Medical Education (MOH) of Iran takes the responsibility of providing proper healthcare for society. An efficient health system needs an active participation and relationship between healthcare providers and healthcare recipients. With this in mind and with the aim of explaining the rights of healthcare recipients and upgrading ethical observance in the field of treatment, which is the most important field of healthcare for Iran, the implementation of the European Charter of Patients’ Rights was declared fundamental by the Ministry of Health and Medical Education for all medical universities in September 2009.

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Health and Human Rights Resource Guide

Health and Human Rights Resource Guide

Written by the FXB Center for Health and Human Rights and Open Society Foundations (September 2013).

Harvard FXB, by invitation from Open Society Foundations (OSF), has developed the 5th edition of the Health and Human Rights Resource Guide. The Resource Guide has been designed to be a user-friendly, multi-purpose tool in advocating for health and human rights with a wide array of users, including health workers, trainers, program designers, litigators, and policymakers. The introduction provides a primer on the right to health and human rights, and the nine chapters each focus on a different health issue or marginalized or vulnerable population. The updated Resource Guide aims to serve as a useful tool for those working to defend and secure human rights.

This report will introduce you to key issues and resources related to human rights in patient care, with a focus on issues such as access to information and care, consent, and confidentiality. This Resource Guide focus on specific populations—such as people living with and affected by HIV, people who use drugs, LGBTQ communities, and minority and indigenous communities— and addresses human rights issues affecting patients as a whole.

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Rights: mobile patients’ rights as human rights

Rights mobile patients rights as human rights

This is a chapter from Part II of the book “European Union Health Law: Themes and Implications” published by Cambridge University Press in 2015.

A contextual analysis of the internal logics of EU health law through four themes: consumerism; (human) rights; interactions between equality, solidarity and competition; and risk. Leading authors in the emergent field explain the interactions and implications of EU health law through thematic reinterpretation of the law in context in key substantive areas, such as the regulation of health research, access of patients to high quality care, health care professional regulation, organisation and funding of health care services, and public health. This book offers a fresh perspective and thorough understanding of EU health law through individual and collective or systemic perspectives and covers health law both within the EU and globally. Essential reading for anyone interested in health law in any EU Member State or in global health law.

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The Principle of Equality in EU Law

The Principle of Equality in EU Law

 Written by Lucia Serena Rossi and Federico Casolari. Published by Springer International Publishing AG (2017).

This book provides a comprehensive and updated legal analysis of the equality principle in EU law. To this end, it argues for a broad definition of the principle, which includes not only its inter-individual dimension, but also the equality of the Member States before the EU Treaties.

The book presents a collection of high-quality academic and expert contributions, which, in light of the most recent developments in implementing the post-Lisbon legal framework, reflect the current interpretation of the equality principle, examining its performance in practice with a view to suggesting possible solutions in order to overcome recurring problems.

The volume is divided into three parts, the first of which addresses an aspect of the EU equality that is mostly overlooked in the investigations devoted to this topic, namely, equality among States. Part II shifts to the inter-individual dimension of equality and explores some major developments contributing to reshaping the global framework of EU anti-discrimination law, while Part III undertakes a more practical investigation devoted to the substantive strands of that area of EU law.

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Constructive Conversations About Health: Pt. 2, Perspectives on Policy and Practice

constructive conversations about health

Written by leading health policy makers and academics from many countries on 15 August 2018, "Constructive Conversations about Health" examines in depth the underlying values and principles of health policy and posits a more enlightened public and political discourse.

Current health policy is required to respond to a constantly changing social and political environment characterized, particularly in Europe, by ageing populations, increased migration, and growing inequalities in health and services. With health systems under increasing strain there is a sense that we need to seek new means of determining health policy. Much political debate focuses on managerial issues such as the levels of health funding and the setting and missing of targets. Meanwhile our moral imperatives, our values and principles, go relatively unexamined. What are these values? Can we agree their validity and salience? How do we manage the paradox of competing goods? Can we find new ways of talking about, and resolving, our conflicting values and competing priorities in order to create sound, appropriate, and just health policies for the 21st Century? The book will be invaluable for those involved in health policy making and governance, politicians, healthcare managers, researchers, ethicists, health and social affairs media, health rights and patient participation groups. Chapter 5 titled “Choice” was written by Giovanni Moro, Founder of Cittadinanzattiva and past Director of Active Citizenship Network.

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Human rights in patient care: A theoretical and practical framework

Human rights in patient care A theoretical and practical framework 

Written by Jonathan Cohen and Tamar Ezer (published in December 2013).

This journal analyzes the concept of “human rights in patient care” referring to the application of human rights principles to the context of patient care. It provides an alternative to the growing discourse of “patients’ rights” that has evolved in response to widespread and severe human rights violations in health settings. Human rights principles that apply to patient care include both the right to the highest attainable standard of health, which covers both positive and negative guarantees in respect of health, as well as civil and political rights ranging from the patient’s right to be free from torture and inhumane treatment to liberty and security of person. They also focus attention on the right of socially excluded groups to be free from discrimination in the delivery of health care. Critical rights relevant to providers include freedom of association and decent work conditions.

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Socio-linguistic analysis of the Charter of Citizens' Rights and Obligations in Health Services/ Análisis socio-lingüístico de la Carta de Derechos y Obligaciones de los Ciudadanos en los Servicios de Salud

Socio linguistic analysis of the Charter of Citizens Rights and Obligations in Health Services

Written by José Granero-Molina, Cayetano Fernández-Sola, Gabriel Aguilera-Manrique, Leonel São-Romão-Preto, Inmaculada Carmen Lara-Palomo, Adelaida M. Castro-Sánchez (2013).

The aim of this study is to carry out a socio-linguistic analysis of the dissemination of the Charter of Citizens' Rights and Obligations in Public Health Services. The study explains a qualitative investigation using observation and content analysis. The data analysis suggests that a clear framework of rights and obligations has been established but is not very familiar to patients and relatives. The conclusion of the analysis is that despite the widespread dissemination and publicity of the Citizens' Charter of Rights and Obligations, the involvement of professionals is still needed.

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Relationship between’ patient’s rights charter’ and patients’ satisfaction in gynecological hospitals

Relationship between patients rights charter and patients satisfaction in gynecological hospitals

Written by BMC Health Services Research (published in 2016).

Patient’s satisfaction with hospital services is one of the most important indicators of efficiency and quality of services of different hospital wards. This cross-sectional descriptive analytical study was conducted in 2015 and it included the study of patients in gynecological hospitals of TUMS. The rights of patients were mainly observed through “quality of care”, “knowing the charges and the right to complain”, and “the presence of an active system to handle complaints of patients in the hospital and the explanation of the error”. It was found that patients are unsatisfied with the services provided.

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Protection of privacy and confidentiality as a patient right: physicians' and nurses' viewpoints

Protection of privacy and confidentiality as a patient right physicians and nurses viewpoints

The article was published by Allied Academies as a Biomedical Research in 2016.

This research article explores the purpose of patient rights to support patients and to strengthen them in social terms. The right to privacy and confidentiality, initially dealt with as a part of personal rights, has become a right in its own way over time, and is now recognized and guaranteed by many constitutions, laws, and international conventions. A cross-sectional survey was conducted on health care professionals at the Training and Research Hospital of the Faculty of Medicine of Eskisehir Osmangazi University in Turkey with the aim of determining physicians' and nurses' attitudes towards the right to privacy and confidentiality of private life, which are important components of patient rights. In this sample, 40.8% nurses and 26.8% physicians reported that they were informed about patient rights and strongly agreed with the protection of privacy, and confidentiality of information. The rights discussed by the article are the ones explicated in ACN’s European Charter of Patients’ Rights.

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Digital Health Tools for Managing Noncommunicable Diseases During and After the COVID-19 Pandemic: Perspectives of Patients and Caregivers

Digital Health Tools for Managing Noncommunicable Diseases During and After the COVID 19 Pandemic Perspectives of Patients and Caregivers

The paper was published by the Journal of Medical Internet Research (November 13, 2020).
The publication aims to present the view of patients and caregivers on the role of digital health tools in managing patients with non-communicable diseases (NCDs) during and after the COVID-19 pandemic, and to identify future directions based on patients’ perspectives.
The reduction of face-to-face medical examinations for patients with NCDs during the first wave of the COVID-19 pandemic has led to healthcare professionals quickly adopting different strategies to communicate and monitor their patients. Such strategies include the increased use of digital health tools. However, patient preferences, privacy concerns, a lack of regulations, overregulation, and insufficient evidence on the efficacy of digital health tools may have hampered the potential positive benefits of using such tools to manage NCDs. The article points out to the key role of the European Charter of Patients’ Rights in developing and designing health technologies focused on the prevention and management of NCDs during the COVID-19 pandemic era and beyond.

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