Active Citizenship Network (ACN) decided to dedicate the 8th celebration of European Patients’ Rights Day in 2014 to “the role of citizens’ organisations in the empowerment of patients with chronic diseases.” On 12 May, speakers examined the different chronic disease networks (e.g. cancer, diabetes, chronic obstructive pulmonary disease(COPD)) and their impacts on political decision making. On 13 May, EPHA participated in the panel discussion on how research policy can respond to growing societal challenges, highlighting that it is crucial to involve civil society and patients’ in the early phase of research and NGOs can facilitate relations between researchers and politicians.
Background Active Citizenship Network (ACN)
Active Citizenship Network (ACN) was initiated in December 2001 as the European and international interface of the Italian civic participation organisation Cittadinanzattiva(Active Citizenship).
The debate focused on two dimensions of patient’s empowerment, as defined by ACN:
- Improvement of a person’s capabilities to effectively self-manage his/her chronic disease;
- Enhancement of patient groups’ capacities to participate efficiently in health policies.
In both cases, citizens’ organisations – which include self-help groups, associations of patients with a chronic disease, networks and umbrella organisations – play an essential role. Patients organisations educate and support individual patients and their families, while networks and umbrella organisations contribute to build their capacities to participate in the policy-making.
Tonio Borg “Every Day Should Be Patients Rights Day.”
In his video message, Health Commissioner Tonio Borg highlighted the important role of both patients and patient’s organisations, also by presenting the EMPATHIE project aiming at better understanding patients’ empowerment. He stated that although there is no consensus among EU countries about patient empowerment, it means ensuring they are fully informed and in control of their own health care. As regards patient organisations, they provide information to patients and bring patients’ views and experiences back to policy makers both at national and European level. As he concluded: “Every day should be patients’ rights day.”
– See the full video message that the Health Commissioner Tonio Borg made for the 8th patients’ rights day in Brussels HERE
– EMPATHIE project: The project entitled “EMpowering PAtients in the management of chronic diseases” (EMPATHiE) aims to achieve a common understanding of the concept of patient empowerment and to identify good practices, success factors and barriers to reach the latter.
Day 1 – Chronic diseases networks added value in policy making
One of the key debates explored the role of chronic diseases patient networks in decision making processes. Various speakers explored the high societal burden of different chronic diseases, including diabetes, cancer, [After circulatory diseases, cancer was the second most common cause of death in 2006, accounting for two out of ten deaths in women and three out of ten deaths in men, equating to approximately 3.2 million EU citizens diagnosed with cancer each year.]], [cardio-vascular disease [Each year cardiovascular disease (CVD) causes over 4 million deaths in Europe and over 1.9 million deaths in the European Union (EU). CVD causes 47% of all deaths in Europe and 40% in the EU.]] and the [chronic obstructive pulmonary disease (COPD) [[The primary cause of COPD is tobacco smoke (through tobacco use or second-hand smoke). In Europe 4-10% of adults have COPD.
Total COPD related expenses for outpatient care (= not in hospital) in the EU is approximately €4,7 billion per year, while for inpatient care (=in hospital) these expenses cost around €2,9 billion, with an additional €2,7 billion per year spent on pharmaceutical expenses. ]]
<img7203|left> The general understanding of speakers and participants was that different chronic diseases are often co-morbidities, patients rarely have only one of them. James Ruvolo from the Partnership to Fight Chronic Disease USA shared his concerns on rising obesity figures, stating that obesity clearly “outweighs” other factors.
Catherine Hartmann, Secretary General of the European COPD Coalition (ECC) who spoke on behalf of the [European Chronic Disease Alliance (ECDA)
->http://www.alliancechronicdiseases.org/] gave examples of successful activities and objectives European networks can develop and achieve with a unified voice of different organisations. Answering a question from the floor she explained that member organisations still maintain their identity and keep focusing on their own specific disease/field of work within an alliance of coalition of associations, and that wider coalition has a complementary role by addressing common risk factors of different diseases.
Day 2 – Research and Responding to growing societal challenges
<img7204|left> EPHA contributed to the panel discussion ‘How can the effectiveness of medical research and innovation be incentivised to ensure that there are adequate treatment options for patients?’ by making the following statements:
– Civil society and patients’ involvement in the early phase of research with researchers and politicians is crucial;
– Energy and climate change, along with population ageing and health are some of our biggest societal challenges and must be addressed to contribute to a healthier society now and in the future;
– There is a conflict between industry interests and societal challenges and research and innovation should address the most pressing societal challenges benefiting all members of society;
– For the Europe 2020 Strategy to be successful, research should tackle public health challenges head on, which would improve population health, reduce health inequalities while ensuring sustainable health systems by reducing the strain these challenges put on them.
– Patients’ needs must be clearly defined and their needs addressed. This is essential because of the principles of democracy, transparency and the unmet needs of patients
EPHA position on the European Research Area
– 10 benefits the EU brings to patients
On the occasion of European Patients’ Rights Day, the European Commission issued a statement listing 10 benefits patients may enjoy due to existing EU legislation:
1) To receive healthcare when visiting another EU country
2) To be reimbursed for healthcare sought in another EU country
3) To receive information on safety and quality standards in EU countries
4) To be treated by qualified healthcare professionals
5) To get a copy of your medical records
6) To have your prescription recognised in all EU Countries
7) To be treated with safe and effective medicines
8) To be able to report suspected side effects of medicines
9) To be treated with safe medical devices
10) To benefit from common high standards of quality for blood, organs, tissues and cells
You can read the full statement here
– The programme of the conference (pdf)
– The concept note of the event is available at the ACN website
– Priority Medicines for Europe and the World 2013 update
– Explore the latest updates on TWITTER by using the #EPRD14 hashtag.
Related EPHA articles