EU Health Policy


European Cancer Patient's Bill of Rights

Cross Boarder Healthcare
Clinical Trials
E-Health
Medical Devices
EU Health Strategy
European Code Against Cancer
Screening
European Partnership for Action Against Cancer (EPAAC)
Cancer Control Joint Action (CanCon)

 
 

European Cancer Patient's Bill of Rights

The European Cancer Patient’s Bill of Rights was launched in Strasbourg 
Charter is a call to action to address the significant disparities that exist for European cancer patients today, and a call for more patient involvement and empowerment. The three patient-centred key principles that underpin the Bill of Rights are:

  1. the right of every European citizen to receive accurate information and be involved in their own care;
  2. the right of every European citizen to access specialised cancer care underpinned by research and innovation, and
  3. the right of every European citizen to cost effective health systems that ensure optimal cancer outcomes.

The Charter specifically highlights the role of patient advocacy organisations in cancer care and the patients' rights to be represented, which is quite unprecedented and unique in a Bill of Patient Rights so far, and which is a tool for us patient organisations to demand more patient involvement.

Click here to read more.

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Cross Border Healthcare

Travel in the EU over the years has become much easier and this can create tensions over where people get their health care and who pays for it. Obtaining healthcare in another country is a complicated area with both legal and economic implications. A number of case brought to the Court of Justice led to agreement that a single approach needed to be adopted. Finally talking ended and legislation was agreed in January 2011 with the publication of Directive 2011/24/EU. 

From 25 October 2013 it will be enforceable and in all countries patients can exercise their right to access treatment in another country and receive information and approval for any planned or unplanned medical intervention.

The Directive, although a compromise from the original plans, aims to strengthen patient care across the EU, to develop shared good practice and to develop collaboration between health systems where this doesn’t exist already. 

It could be argued that this legislation is the first step in making sure that more uniform healthcare is available across all of Europe to all citizens no matter where they live.

The European Patients Forum has produced a useful and informative toolkit which can be accessed at - http://www.eu-patient.eu/Press/News/A-toolkit-to-help-you-make-your-way-through-the-Cross-Border-Healthcare-Directive/

The legislation sets out the rights of patients who seek healthcare in another Member State by making provision for the introduction of a general framework to:

  • clarify patients’ rights with regard to accessing cross-border healthcare provision;
  • guarantee the safety, quality and efficiency of care that they will receive in another EU Member State;
  • promote cooperation betweenMemberStateon healthcare matters.

A new website has been established to provide information about National Control Points where information is available for citizens. It will not be reviewed for another 2 years but all citizens are invited to contribute through their local patient organization to the monitoring of this new system and contribute to raising awareness where the system is failing citizens.

EuropaColon will work to make sure that people with colorectal cancer are able to receive the most appropriate care, even if this entails receiving care in another country, either because the hospital is more conveniently located or because the oncologists or surgeons are more able to manage a specific condition.
 

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Clinical Trails

The Commission recently tabled a new Directive on Clinical Trials in an attempt to create a single and more unified approach to the approval and management of clinical trials, bringing together local regulatory and ethical approval systems in a simpler and quicker process across Europe. The purpose of the Directive is to create an environment that improves and sustains the clinical trials market in Europe.

The aim is to restore the levels of clinical trials in Europe, having fallen by 25% and develop a more unified approach, more easily enabling access to huge volumes of patients. It is hoped this will make recruitment of patients into trials and the approval for trials easier for everyone concerned. It is believed that more clinical trials will help support the health of the people of Europe.        

EuropaColon was disappointed that recommendations for the inclusion of views from a patient or patient group to the design of all new trials was rejected by the Council. 

We believe that the patient experience should be captured in depth in every phase III trial and this information be used to support and influence the HTA approval process.

EuropaColon is pleased that greater transparency will be the outcome likely to be approved by the Parliament on 2nd April 2014. It will only be fully operational once the new databases have been developed. Once this happens everyone will be able to view all trials being conducted; the results from every trial; when a trial has been stopped; why, etc. 

Recommendations:

  • EuropaColon encourages Member States to make the necessary changes to implement this new Directive as this could improve assess to clinical trials and deliver earlier results.
  • EuropaColon would like to see more information about trials being made routinely available to patients as we believe healthcare will be improved if more patients come forward to participate in clinical trials as this will offer more clinical choice today and in the future.
  • EuropaColon believe that the patient experience should be captured fully within every phase III trial and this information integrated into and used to influence the HTA approval process.
     
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e-Health

e-health is a relatively new term and covers healthcare practice that is supported by electronic processes of communication. While it is an evolving concept it currently embraces:

  • Electronic health records: communicating patient data between different healthcare professionals (GPs, specialists etc.);
  • Telemedicine: physical and psychological treatments at a distance;
  • Consumer health informatics: use of electronic resources on medical topics by healthy individuals or patients;
  • Virtual healthcare teams: healthcare professionals who collaborate and share information on patients through digital equipment;
  • m-Health: includes the use of mobile devices in collecting patient health data;
  • Health knowledge management: such as access to the latest medical journals, best practice guidelines or epidemiological tracking.

e-Health is made possible by the continuing development of the world wide web and similar communication tools and is increasingly seen as means to create efficient working practices, minimise wasteful variation, bring about measurable savings and ensure value for money.

e-Health will enable people to communicate more easily with their healthcare providers, manage their own health and become more active participants in the care and services they receive.

It is likely that this will contribute to greater integration of care and support for people, especially those with long-term conditions. It should improve information to support the work of healthcare staff providing tools to communicate information effectively to improve quality.

Importantly it will improve medicines safety for patients and provide speedy updates to clinical and managers across the health and social care spectrum to help make decisions on service quality, performance and delivery.

EuropaColon acknowledges that we live in a world of swiftly changing and easy communication and this should enable more information to be shared with all parties involved in healthcare to improve the overall health of all people in Europe and will campaign to achieve this.

Recommendations:

  • EuropaColon supports the expansion of means to manage healthcare through new and developing technologies
  • We believe more information, not less, will improve patients experience and outcomes
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Medical Devices


Within the EU, medical devices were defined by Directive 2007/47/ec as: "any instrument, apparatus, appliance, software, material or other article, whether used alone or in combination, including the software intended by its manufacturer to be used specifically for diagnostic and/or therapeutic purposes and necessary for its proper application, intended by the manufacturer to be used for human beings.


Devices are to be used for the purpose of:

  • Diagnosis, prevention, monitoring, treatment or alleviation of disease
  • Diagnosis, monitoring, treatment, alleviation of or compensation for an injury or handicap
  • Investigation, replacement or modification of the anatomy or of a physiological process
  • Control of conception

This includes devices that do not achieve its principal intended action in or on the human body by pharmacological, immunological or metabolic means, but which may be assisted in its function by such means." 

Pharmaceutical products achieve their principal action by pharmacological, metabolic or immunological means, but medical devices act by other means like physical, mechanical, thermal, physico-chemical or chemical means to be effective.

Since 1985 the EU has defined the rules relating to the safety and performance of medical devices and were harmonised by a number of Directives between 1990 and 1998. The aim is to remove technical barriers to trade and dispel the consequent uncertainty for economic operators allowing for the free movement of goods inside the EU.

More importantly for patients, they aim to ensure a high level of protection of human health and safety within the good functioning of the Single Market. Each country appoint as Competent Authority to act on behalf of the government of the Member State with regards to all devices.

Recommendations:

  • EuropaColon will campaign to ensure that patient get access to the most up to date and suitable medicines and devices for their condition as we believe it is a fundamental human right to have access to the best standards of treatment and care.
     
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EU Health Strategy

The European Union Health Strategy is to ensure a high level of health protection across all policies and actions. It has a role in complementing national action on health. This means protecting people from health threats and disease, promoting healthy lifestyles and bringing national authorities in the EU together on health issues.

The EU does not directly influence local health strategy or delivery, instead it makes recommendations where co-operation and joint working could make a difference to the people of Europe. This usually means advising on some of the bigger issues where joint activity between States helps create equality in healthcare, 

Two of these are areas that EuropaColon and our partners feel are important for people with colorectal cancer:

  1. Shared health values: When a Country becomes a member of the EU they agree to support the values of universality, access to good quality care, equity and solidarity. The EU Charter of Fundamental Rights recognises everyone’s right to access preventive healthcare and to benefit from medical treatment.
  2. “Health is the greatest wealth” - A healthy population is not only good for each of us individually but essential if the EU is to be economically effective. As a result good health in Member States is very important and spending on health is not just a cost but an investment in the Countries’ future success.

To help deliver this EuropaColon partners are working with governments to make sure that formal population screening is firmly on the health agenda and available to all citizens. We are also actively seeking to ensure all people with colorectal cancer have access to the most up to date treatment and care.

EuropaColon supports the Patient Rights set out in the collaborative document produced by European Patients Forum and available at www.eu-patient.eu

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European Code against Cancer

The European Code against Cancer was originally drawn-up by a committee of cancer experts in 1987 with a number of practical recommendations to prevent cancer, such as adopting healthier lifestyles and participating in screening programmes. This was revised and adopted by the Cancer Experts Committee in 1994 with a third edition  published in 2003.
 

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Screening

To assist the Member States with cancer screening, the Commission produced European guidelines for quality assurance in cervical cancer screening (2006), for breast cancer screening and diagnosis (2008) and colorectal cancer screening and diagnosis  (2011) . These guidelines are the first comprehensive EU-wide guidelines for effective population-based screening. The guidelines offer Member States advice to organise their health systems more effectively, including the diagnosis and management of cancers detected in screening. 

The Guidelines recommend that every citizen of eligible age should receive an official invitation to participate in and benefit from screening and so reduce health inequalities (this is known as formal population screening involving the whole population). EuropaColon supports this comprehensive approach to screening in preference to opportunistic or more casual (individual) approaches to screening as this gives equality to all citizens.

These Guidelines reflect the latest evidence confirming that formal population-wide screening programmes will help reduce deaths from colorectal cancer by up to 15%. Evidence shows that screening leading to early detection of colon cancer is very cost effective, saving large sums of money than people who are diagnosed with later stage colon cancer.

The Guidelines offer clear principles and recommendations to be followed when setting up a screening programme. They cover the whole process from inviting people for screening, to diagnosis and clinical management. 

In 2007 population-based programmes were being rolled out nationwide in five countries (Finland, France, Italy, Poland and the United Kingdom). Seven countries had established nationwide non-population-based programmes (Austria, Bulgaria, Czech Republic, Germany, Greece, Latvia and the Slovak Republic). Five countries were planning or piloting a nation-wide population-based programme (Hungary, Cyprus, Portugal, Romania and Slovenia).

EuropaColon believes that the EU adoption of formal population screening is the most effective means to identify and manage colorectal cancer and is disappointed that it is not always adopted. Some countries have adopted opportunistic screening, meaning that screening is available if symptoms are noticed or where there is a family history, or where people voluntarily undergo screening tests. EuropaColon is in favour of and will campaign for formal population screening to be widely adopted. This is the ONLY way to guarantee most colorectal cancers are identified. Our partners will be campaigning to make sure screening is introduced as soon as possible in countries where it is not yet available and for the recommendations to followed to save as many lives as possible. 

The Guidelines can be downloaded from – bookshop.europa.eu

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European Partnership for Action Against Cancer (EPAAC)

The European Commission proposed the European Partnership for Action Against Cancer (EPAAC) for the period 2009-2013 to support member states in their efforts to tackle cancer, providing a framework for identidying and sharing information, capacity and expertise, and engaging relevant stakeholders across the European Union in a collective effort to control cancer.  With activities running from early 2011 to early 2014, the EPAAC Joint Action has spanned work in the fields of cancer prevention and health promotion; health communication, screening and early diagnosis; healthcare coordination of cancer research; cancer information and data; and National cancer programmes.

For more information, visit the EPAAC website by clicking here

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Cancer Control Joint Action (CANCON)

Cancon aims to contribute in different ways to reducing the cancer burden in the EU.

Europacolon is proud to have been invited to be a collaborating partner on CANCON.
We will be actively participating in Work Packages (WP's) 6, 7 & 9.
Visit the CANCON website by clicking here

List of Newsletters

1 (12/3/2014)

2 (13/5/2014)

3 (26/6/2014)

4 (31/7/2014)

5 (10/9/2014)

6 (15/10/2014)
 
Full newsletters can be read at www.cancercontrol.eu/news-events/newsletters 


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