Patients' Rights Day
 Patients’ rights are becoming an increasing concern of EU institutions and stakeholders, as can be seen by the EU Directive on "patients’ rights in cross-border healthcare" adopted in 2008. Active Citizenship Network (ACN), with the support by many patient organisations across Europe, has campaigned for the celebration of a European Patients’ Rights Day every year on 18 April in all EU Member States as an occasion to inform, discuss and take commitments to improve patients’ rights in Europe. On 22 April 2009, ACNheld a conference in Strasbourg where achievements were presented. See the report in HSCNews here.
The Society of Volunteers Against Cancer AGALIAZO of Piraeus, Greece, has cooperated with ECPC in setting up the participation of ECPC and its members in the celebration of the European Patients Rights Day on 18 April 2009 and in the diffusion of the European Charter of Patients Rights. We thank AGALIAZO and Mrs. Kathi Apostolidis, Chair Cancer Patient Rights Program, for their support.
Patients Rights in EU Member States - the Value+ Report
The EU-funded "Value+" project has provided an excellent overview of the rights of patients throughout the European Union (EU) - both on the EU legislative level as well as regarding patients rights of each EU member state. It was last updated end of 2009. Download the PDF here.
Patients Rights Charters
We welcome any initiative that supports patients’ rights and congratulate ECL and ACN on the hard work that has gone into producing Charters on this important issue:
- The European Cancer Leagues (ECL) published the European Guidelines for Cancer Patient Rights in 2004, a discussion that started in 2001 before ECPC was founded. The guidelines are posted on the ECL website.
- Active Citizenship Network (ACN) together with a group of European citizens organizations in 2002 established the European Charter of Patients’ Rights. See PDF file here, or look below.
- Based on the ACN's charter, ECPC has highlighted a number of amendments on specific needs of cancer patients, see below.
- The Teenage Cancer Trust (UK) and other groups have advocated in 2010 for an International Charter of Rights for Young People with Cancer, see below.
ECPC, together with other national and European patient organisations has always advocated for improvement of the rights of cancer patients. For example, the Warsaw Declaration, which was co-signed in 2005 by more than 140 cancer advocates, called on policy makers, politicians and key stakeholders urgently to "encourage and adopt national Charters of Patients’ Rights according to European guidelines". ECPC has played a major role in organizing the Warsaw Summit.
ACN's European Charter of Patients' Rights
In 2002, Active Citizenship Network (ACN), together with 12 other European citizens organizations, established the European Charter of Patients’ Rights. The charter (PDF here) outlines 14 basic rights of patients. All these rights, based on the Charter of Fundamental Rights of the European Union, are fundamental in relation to European citizens and healthcare services.
Active Citizenship Network's
European Charter of Patients' Rights
- Right to preventive measures
Every individual has the right to a proper service in order to prevent illness.
- Right of access
Every individual has the right of access to the health services that his or her health needs require. The health services must guarantee equal access to everyone, without discriminating on the basis of financial resources, place of residence, kind of illness or time of access to services.
- Right to information
Every individual has the right to access to all information regarding his or her state of health, the health services and how to use them, and all that scientific research and technological innovation make available.
- Right to consent
Every individual has the right of access to all information that might enable him or her to actively participate in the decisions regarding his or her health; this information is a prerequisite for any procedure and treatment, including the participation in scientific research.
- Right to free choice
Each individual has the right to freely choose from among different treatment procedures and providers on the basis of adequate information.
- Right to privacy and confidentiality
Every individual has the right to the confidentiality of personal information, including information regarding his or her state of health and potential diagnostic or therapeutic procedures, as well as the protection of his or her privacy during the performance of diagnostic exams, specialist visits, and medical/surgical treatments in general.
- Right to respect of patients’ time
Each individual has the right to receive necessary treatment within a swift and predetermined period of time. This right applies at each phase of the treatment.
- Right to the observance of quality standards
Each individual has the right of access to high quality health services on the basis of the specification and observance of precise standards.
- Right to safety
Each individual has the right to be free from harm caused by the poor functioning of health services, medical malpractice and errors, and the right of access to health services and treatments that meet high safety standards.
- Right to innovation
Each individual has the right of access to innovative procedures, including diagnostic procedures, according to international standards and independently of economic or financial considerations.
- Right to avoid unnecessary suffering and pain
Each individual has the right to avoid as much suffering and pain as possible, in each phase of his or her illness.
- Right to personalized treatment
Each individual has the right to diagnostic or therapeutic programmes tailored as much as possible to his or her personal needs.
- Right to complain
Each individual has the right to complain whenever he or she has suffered a harm and the right to receive a response or other feedback.
- Right to compensation
Each individual has the right to receive sufficient compensation within a reasonably short time whenever he or she has suffered physical or moral and psychological harm caused by a health service treatment.
|
ECPC Position on Cancer Patients' Rights
Based on the ACN's "European Charter of Cancer Patients Rights", ECPC would like to highlight a number of amendments which are deemed necessary because they outline specific needs of cancer patients:
- Right to prevention must include early detection
Every individual should have the right not only on prevention of illness, but also on access to early detection programmes as common cancers can be treated at an early stage.
- No discrimination also on age, race, gender, and economic status of individuals
Over and above the criteria of non-discrimination on the basis of financial resources, residence, kind of illness and time of access, ECPC strongly supports the call of the Warsaw Declaration which opposed the discrimination because of age, race, gender, domicile and economic status in respect of the latest cancer treatment.
- Right to return to work or receive financial support
Cancer patients should have the right to return to work, or if unable, to receive social benefits.
- Right to multidisciplinary treatment and second opinion
Every individual has the right to an optimal health care service. Because cancers are very complex diseases, health services should be delivered by multidisciplinary teams of doctors and carers. Patients must have the right to a second opinion,
- Right to mobility
Because experts for certain cancers are sometimes far away, patients must have the free choice of the place where the best possible care is provided. As mobility creates a financial burden for individuals, patients should receive support for mobility.
- Right to quality care also based on expert guidelines
Over and above the right of access to high quality health services based on official standards, cancer patients should receive diagnostics and treatment in accordance to agreed national and international expert guidelines.
- Right to representation
Patients’ advocacy groups empower patients to be an equal partner in cancer care, optimizing treatment and outcome in all areas that affect their health. Cancer patients must be supported in their right to build representative authorities, and must be represented in all relevant decision making bodies of healthcare.
International Charter of Rights for Young People with Cancer
The Teenage Cancer Trust (UK), Canteen (Australia), Canteen (New Zealand), LiveStrong Alliance (USA) and Seventyk (USA) have advocated in 2010 for an "International Charter of Rights for Young People with Cancer". Their official website is cancercharter.org where the charter can be signed.
International Charter of Rights for Young People with Cancer
We are neither paediatrics nor geriatrics;
We have unique needs - medically, developmentally, socially, and economically.
We have the right to have these unique needs recognised.
Like all age groups, we deserve to have our dignity, our beliefs, our privacy and our personal values respected.
Regardless of financial, familial, ethnic or other background, access to quality cancer care and age-appropriate support is a right, not a privilege.
Young people with cancer have the right to:
- Receive education about cancer and its prevention including early detection
- Be taken seriously when seeking medical attention and receive the earliest possible diagnosis and speedy referral for suspected cancer
- Have access to suitably qualified multi-disciplinary medical specialists with significant experience in treating cancer in this age group
- Information about and reasonable access to clinical trials and treatment that has been clinically trialled with people in their age group
- Receive age-appropriate support including, but not limited to, psychosocial, community and palliative support services
- Empowerment in making decisions supported by full and detailed explanation of all treatment options and long-term effects of the disease enabling them to actively influence their care
- Fertility preservation, as well as information and counselling concerning short-term and long-term effects of cancer and treatment which affect fertility
- Have access to specialised treatment and services in age-appropriate facilities alongside their peers
- Financial and practical support to minimise the burden of the disease during treatment
- Elimination of all forms of discrimination, during and beyond treatment, in education, vocation and insurance, or in the community.
Preserve our potential.
|
PREDICT Charter for the Rights of Older People in Clinical Trials
Older people are the fastest growing section of the population in Europe and the more developed countries. Most long term conditions increase in prevalence with age and it is therefore not surprising that older people also take more medications than other groups. The discovery of new classes of drugs for conditions that were previously untreatable, the use of multiple drugs to treat one condition, the coexistence of multiple pathologies together with better access to healthcare have all contributed to this rise in prescriptions.
Older people also have the highest risk of adverse drug events, mainly due to the consumption of multiple drugs. Older people also benefit from evidence based nonpharmacological interventions. Although both national and international regulators now require that older people are included in clinical trials, it is of great concern that this happens infrequently.
The PREDICT project was established “to help identify, address and resolve the issues related to the exclusion of older people from clinical trials using the full range of scientific and clinical disciplines”. It has published the "Charter for the Rights of Older People in Clinical Trials" which is available here. In summary, it covers the following issues:
- Older People Have The Right To Access Evidence-based Treatments
- Promoting The Inclusion Of Older People In Clinical Trials And Preventing Discrimination.
- Clinical Trials Should Be Made As Practicable As Possible For Older People
- The Safety Of Clinical Trials In Older People
- Outcome Measures Should Be Relevant For Older People.
- The Values Of Older People Participating In Clinical Trials Should Be Respected.
|
17% United States
13% Belgium
8% United Kingdom
7% Germany
5% Italy
4% France
4% Unknown
3% Switzerland
3% Russian Federat...
3% Netherlands
