Cittadinanzattiva has more than 30 year experience in the protection of citizens' rights in the health sector, which initiated with its Tribunale per i diritti del malato ("Tribunal for Patients' Rights" or TDM) in 1980 and was later strengthened through the Coordinamento nazionale Associazioni Malati Cronici (National Coordination Centre of Chronic Patients' Associations) in 1996.
In spite of the fact that about 97% of health budgets are presently spent on treatment, whereas only 3% are invested in prevention (EU Commission 2013), we are convinced that prevention is imperative. CVDs are the number one cause of death globally: more people die annually from CVDs than from any other cause. The number of people who die from CVDs, mainly from heart disease and stroke, will increase to reach 23.3. million by 2030. CVDs are projected to remain the single leading cause of death. At a European level, the, the European Heart Network calculated that the cost for the treatment of cerebro and cardiovascular diseases is more than 196 billion euros each year.
To reduce the number of deaths due to cardiovascular diseases, European Member States found an agreement in 2013 with the Health for Growth - Proposal for the 3rd multi-annual programme 2014-2020. The aim is to identify, spread and promote the adoption of validated good practices for efficient and sustainable prevention measures, facing the main risk factors related to cardiovascular diseases, fighting tobacco use, alcohol dependence, obesity and promoting good lifestyles.
In this context, over the last 15 years, our organization has been increasing its contributions for the prevention of cardiovascular and cerebrovascular diseases through the following strategic actions:
1. Protection against violations of the right of individual citizens, through its free-of-charge counselling, information and support service provided by 300 TDM offices located nationwide.
2. Production of civic information
ANNUAL REPORT ON HEALTHCARE
Since 17 years, we collect citizens’ concerns and warnings in the annual report about the Italian healthcare system produced by the National headquarter, local centers and Tribunal for patients’ rights offices of all over Italy. This report (so called Pit) wants to give a picture of the Italian healthcare seen from citizens’ point of view. In this context, citizens have underlined that the main issues concerning treatments and services related to cardio and cerebrovascular diseases are:
- Too long waiting-lists for diagnosis exams (9.8% in the cardiology area, 24% in radiology, 17.5% in oncology and 13.6% in gynecology);
- Waiting-lists for specialized examinations in the cardiology area (25% of the total; only ophthalmology comes first with 25, 6%);
- Difficulties in local healthcare assistance;
- Difficulties in hospitals, considering that 8% of citizens with neurological pathologies and 7,6% of people suffering from cardiovascular diseases highlights premature releases and problems of taking care;
- Difficulties in access to drugs (costs, bureaucratic and administrative barriers) and to therapeutic plan
“MI STA A CUORE” (2014) – CIVIC SURVEY ON ACCESS TO SERVICES AND CARE PATHWAYS IN THE FIELD OF CARDIO AND CEREBROVASCULAR DISEASES
Presented in March 2014 to the Italian Parliament by Cittadinanzattiva-Tribunal for patients’ rights 'Mi sta a cuore', done with the aim of analyzing the way in which some Italian regions and primary care centers are implementing the networks of prevention, treatment and taking care of patients with cardio and cerebrovascular diseases, shows the work of different Italian regions and primary care providers in order to monitor and improve prevention, treatment and care systems. The survey shows that when talking about prevention programs, emergency management, continuity of care for patients there is a very heterogeneous situation among the Italian regions. More specifically, prevention is really different considered especially related with health lifestyle suggestions, tobacco use and excessive use of salt fight, physical exercise and young people education.
3.Participation in institutional working tables
In 2014 the Italian Minister of Health appointed Cittadinanzattiva in the committees that will elaborate the “National Plan of Chronicity” that will deal with cardio and cerebrovascular diseases.
4. Promotion of local initiatives to raise citizens’ awareness such as:
“FIRST WALK FOR YOUR HEART” (2014)
The initiative was organized in April 2014 in Recanati (Macerata) by Cittadinanzattiva of Porto Recanati Onlus and the Association of diabetic patients’ protection, the Association Camminiamo Insieme with the contribution of the city neighborhoods, Civil Protection and many other citizens’ associations. Lots were the participants, including children, who had fun with the heart-shaped red balloons. The walk finished in the main square of the city where a cardiologist explained what is the right lifestyle to have a healthy cardiovascular system for as long as possible, recommending to daily walk in order to keep in shape.
5. Promotion of informative campaigns for citizens at national level, such as:
Stroke is one of the main causes of women and men death, and in many cases this pathology could have been prevented. For this reason, the Tribunal of Patients’ rights- Cittadinanzattiva launched a campaign for the prevention of cardiovascular risk named “Rincuorando”.
The campaign was designed for the citizens’ information, in particular:
- Concerning the importance of a lifestyle that puts the attention on the control of risks factors such as tobacco use, hypertension, not balanced diet, absence of physical exercise;
- Concerning the information about home/self-blood pressure monitors to be done by patients at home. Home blood pressure measurement has the advantage that BP recordings can be measured in different days and moments of daily life. It can be a real help for doctors to verify the efficiency of treatments;
- Concerning the need of looking at this information as some kind of guidelines for the cardiovascular risk prevention;
This campaign for the prevention of cardiovascular risk was realized by Cittadinanzattiva-Tribunal of patients’ rights in collaboration with Fimmg-Federazione Nazionale Medici di Medicina Generale, Fondazione italiana per il cuore (National Federation of Physicians of General Medicine), Assofarm (federation that puts together 1600 public pharmacies) and in partnership with Ratiopharm.
The instruments used to raise the public awareness on primary and secondary prevention were:
- a vademecum on right lifestyles for citizens with risk of cardiovascular diseases, with useful suggestions in order to control risk factors (diet, tobacco use, obesity, cholesterol, diabetes and menopause);
- a “diary of pressure” to take note of the home/self-blood pressure measurement;
- a cardiovascular risk sheet presented to citizens in form of questionnaire to be filled with the help of the family doctors to estimate the level of personal risk;
All this was meant as an input to stimulate the personal reflection on risky behaviors (the vademecum), but also the debate with family doctors (the test elaborated on the model of cardiovascular risk charts) and the active participation to the management of the own conditions (the “diary of pressure” to take note of the home/self-blood pressure measurement).
These information instruments were widespread through the local network of Cittadinanzattiva (10.000 active citizens in hospitals and local services, organized in 300 Tribunal of patients’ rights local sections), 30,000 medical practices and 1,600 local pharmacies.
Pharmacies, hospitals, medical practices and local services were the places where citizens could learn about the initiatives of Rincuorando and have the materials dedicated to them. To propose and explain the initiatives and the materials were the same doctors, pharmacists or volunteers of Cittadinanzattiva-Tribunal of patients’ rights.
Together with the direct action of citizen, the project also included a working table with different subjects committed in the project concerning future initiatives with the same aim.
“CARDIOLAB” (ongoing from 2003)
Campaign entirely dedicated to develop initiatives to raise awareness of cardiovascular and cerebrovascular diseases, sponsored by Bayer, in which also participated Cittadinanzattiva, the Coordination of the Associations of patients with chronic diseases, ALT-Associazione per la lotta alla trombosi, FAND-Federazione Associazione Nazionale Diabetici and Aid-Associazione Italiana Diabetici.
With the participation of physicians in medical practices and public squares of Italian cities, specialist in cardiology and volunteers of the Italian Red Cross, the aim of the pluriannual campaign was to calculate the global cardio and cerebrovascular risk of patients through the measurement of blood pressure, cholesterol and glycaemia. These free and open to everybody medical examinations were the instrument to inform and raise the awareness of people about the relevance of prevention of stroke and ictus, through anonymous questionnaires and epidemiological data to have a picture of the situation in different realities. The project, started in 2003, during the years reached more than 170 Italian cities for a total of 56.000 medical examinations.
“MI STA A CUORE” Awareness campaign (2014)
With the campaign “Mi sta a cuore” Cittadinanzattiva wants to make citizens aware of how to prevent cardio and cerebrovascular diseases and what are the treatments they have the right to access to.
The campaign, realized with the non-conditioned contribution of Bayer, want to raise citizens’ awareness of the importance of right healthy life styles and of the risks that can determine cardio and cerebrovascular diseases. With this aim an informative guide was created on the topic also thanks to the collaboration of Federfarma.
Since November 2014, the guide will be downloaded from the website www.cittadinanzattiva.it and widespread by the Tribunal of patients’ rights offices and by the 20 public initiatives organized between November and December at a national level.
Promoting and wide spreading the knowledge of these topics through the pharmacies is an occasion to guarantee to citizens correct and specific information at national and local level. For this reason, Federfarma guaranteed the willing of pharmacies to actively participate to the promotion of this initiative, raising the awareness of citizens about the messages of this campaign, but also offering a free control of high, weight and blood pressure to people potentially risking cardiovascular diseases. To promote the initiative a roll-up was realized to be sent to pharmacies.
6. Participation in raising awareness campaigns and international networks:
“SIGN AGAINST STROKE IN ATRIAL FIBRILLATION”
Active Citizenship Network, Cittadinanzattiva European branch decided to be involved in this campaign and participates to the activities of STROKE ALLIANCE FOR EUROPE (SAFE), the European Alliance that deals with stroke and that represents patients at European level. The Alliance works with the double aim to drive stroke prevention up in the European political agenda and prevent the incidence of stroke through education.
“WORLD HEART DAY”
It is a special Day organized for the first time in 2000 by the World Heart Federation. It takes place every last Sunday of September and it has the goal to raise the awareness of the importance of the prevention for the cardiovascular diseases. Every year the Day focuses on a specific aspect of the issue. Since many years
Cittadinanzattiva participates in the initiative with the goal of contributing to raise the awareness of public opinion and promote prevention measures to reduce the incidence of cardiovascular diseases and ictus all over the world. All this is important to put people in the condition of making conscious and right choices for their heart health wherever they live, work and play.
“Increasing consciousness and access to treatment, reducing the burden of cardiovascular diseases across Europe” EU project (2019-2021)
To increase the awareness of a growing number of patients’ rights associations on the importance of the prevention of pathologies correlated to cardiovascular protection, Active Citizenship Network launched, starting from the second half of 2019, a multi-annual EU project consisting of the following initiatives: a cycle of training seminars; an European and national awareness campaign on proper lifestyles and on the prevention of the risks linked to cardiovascular disorders and pathologies; a public event held at the EU level to share good practices and political views to subject to the attention of the new European institutions.
The aim of the EU project was to: increase consciousness on correct lifestyles and access to treatment, collecting good practices and reducing the burden of cardiovascular diseases across Europe; raise the citizens’ awareness about EU patients’ rights, with specific reference to cardiovascular diseases; inform citizens on the organisations committed to give information to patients affected by CVDs and about the national patient associations available for assistance; contribute to fill the discrepancy between the associations already focused on CVDs and the ones who are not yet. The project was joined by many civic and patients’ associations coming from 16 different countries. Supported by Bayer, the advocacy expertise on CVDs at the EU level was guaranteed by the European Congenital Heart Disease Organisation, Stroke Alliance for Europe and The Heart Failure Policy Network, and by Federazione diabete Emilia Romagna Fe.D.E.R. and Cittadinanzattiva-Emilia Romagna at the local level, while the scientific support was provided by the Italian Society of General Medicine and Primary Care (SIMG).
A cycle of 8 EU training seminars (2020-2021)
In the framework of the EU project “Increasing consciousness and access to treatment, reducing the burden of cardiovascular diseases across Europe”, 21 PAGs from 16 different EU and extra-EU countries have been involved in a cycle of training seminars addressed to the leaders of civic and patients’ associations from different European countries, which are not yet particularly focused on the theme of cardiovascular protection, in the definition and dissemination at the national level of an awareness campaign, in a policy dialogue & networking at the EU level.
“Promoting civic information to better address the collateral damage of COVID-19 on cardiovascular disease across Europe” EU event (2021)
Active Citizenship Network realized on September 29, 2021 the digital EU event titled “Promoting civic information to better address the collateral damage of COVID-19 on cardiovascular disease across Europe”. The webinar, scheduled in occasion of the annual “World Heart Day”, was realized thanks to the support of Bayer and was hosted by the MEPs Interest Group “European Patients' Rights & Cross-Border Healthcare”.
The aim was to spread awareness about heart disease and stroke prevention and to highlight some key messages, both in terms of prevention and in terms of health priorities for the coming years. About it, the European webinar, held in the framework of the cycle of EU Webinars «Health at the heart of the future of Europe», which ACN held to feed the debate of the Conference for the Future of Europe, was successfully included in the portal of the EU Union focused on the Conference for the Future of Europe.
“Let’s act on our future”: European and national awareness campaign on cardiovascular disease prevention (2021)
In occasion of the “World Heart Day”, Active Citizenship Network carried out for the first time at the EU level ad hoc European and national awareness campaigns on proper lifestyles and on the prevention of the risks linked to cardiovascular disorders and pathologies. As part of the initiative, realized as part of the multi annual EU project “Increasing consciousness and access to treatment, reducing the burden of cardiovascular diseases across Europe”, 3 different videos were realized and subtitled in 10 different languages. The videos dealt with the three key risk factors for cardiovascular diseases: unhealthy eating habits, smoking, and inactive lifestyle. To know more, please click here. To watch the videos, please visit the ACN official YouTube channel.
“Stroke prevention and life after stroke, during the pandemic” EU event (2021)
The training webinar entitled "Stroke prevention & life after stroke, during the pandemic” was realized in October 2021 in the framework of the project “EU PAGs & citizens together in the fight against stroke” on the occasion of the World Stroke Day. The EU event focused on stroke prevention and life after stroke, with concrete examples of activities and tools that can improve the lives of patients and caregivers. The main objective was to provide an overview in order to know how to recognize and share the official sources of information to identify, recognize, and combat the main risk factors (pre-stroke) and to be aware of patients’ rights (pre and after a stroke); to discuss and address the main challenges faced during the COVID-19 pandemic to prevent and to live after a stroke; to be better equipped to protect rights and promote policies, at EU and local level. To know more, click here.
"Knowing your patients' rights and come back to cure”, EU social media awareness campaign (2021)
In the framework of the project “EU PAGs & citizens together in the fight against stroke”, Active Citizenship Network launched "Knowing your patients' rights and come back to cure”, an EU social media awareness campaign designed as a follow up of the EU training webinar "Stroke prevention & Life after stroke, during the pandemic", which took place on October 29, 2021 in occasion of the “World Stroke Day”.
The campaign was realized thanks to a collection of statements & pictures of the leaders of Patients Advocacy Groups (PAGs) and civic organizations engaged in the training and focused on the positive, emotional values of stroke prevention to send clear messages on the topic directly from citizens to citizens. Above all, the campaign aimed at spreading across Europe all the main key messages which emerged from the training. To see the campaign with its 12 statements, please click here or visit the ACN official Twitter channel.
“Mi Sta a Cuore” civic survey (2021-2022)
During the second half of 2021 and the first half of 2022, Cittadinanzattiva launched, in collaboration with FIMMG (Italian Federation of General Practitioners) and Gise (Italian Society of Interventional Cardiology) and with an unconditional contribution from Abbott, the "Mi Sta a Cuore" civic survey dedicated to the conditions of patients suffering from cardiovascular diseases (CVDs). In the framework of the project, Cittadinanzattiva and its partners will be engaged in an information and data collection campaign to investigate the condition of CVDs patients and to define a model of care that takes into account the diversity of territories and the personalized needs of patients. The surveys are targeted to patients and physicians, which are a necessary point of view to take a snapshot of the different systems for taking care of patients and develop an ideal model that can become the heritage of the National Health Service. The project overall aims at developing an alert system capable of identifying patients with cardiovascular risk before the acute event and at consolidating a prevention pathway that is based on the collaboration of the different healthcare actors working together on patient health pathways.
“Prevention and Care of Cardiovascular Diseases during the Covid-19 Pandemic: Will the National Resilience and Recovery Plans help in reducing its burden?” (2022)
As part of its long-standing partnership with Clinical Cardiology Updates (CCU), a peer-reviewed, open-access journal that considers articles on all facets of the heart and cardiovascular system, Active Citizenship Network recently published, on 25 January 2022, a manuscript dedicated to the topic of cardiovascular diseases (CVDs) entitled “Prevention and Care of Cardiovascular Diseases during the Covid-19 Pandemic: Will the National Resilience and Recovery Plans help in reducing its burden?”. The article examines the collateral damage of Covid-19 on CVDs, addressing in particular the importance of care and prevention of CVDs at the local and national levels, through the National Resilience and Recovery Plans, and at the EU level, advocating on the newly formed “European Alliance for Cardiovascular Health” (EACH). To view the article online, click here. To download the article, click here.
Official MoU with Heart Failure Policy Network (2022)
Active Citizenship Network is glad to have officially signed a Memorandum of Understanding with the Heart Failure Policy Network (HFPN), an independent, multidisciplinary platform of healthcare professionals, advocacy groups and policymakers from across Europe who work together to raise awareness of unmet needs surrounding heart failure. ACN and HFPN have agreed to cooperate and support each other’s initiatives with the objective to raise awareness on the needs surrounding patient care with relation to CVDs and heart failure prevention and promote the empowerment and participation of patients in European public policies, activities, and dialogues as a key step towards a more inclusive Europe.
“Towards a new normal: Why boosting cardiovascular health is critical” Position Paper (2022)
Active Citizenship Network contributed to the drafting of the Position Paper entitled “Towards a new normal: Why boosting cardiovascular health is critical - Opportunities for healthcare systems to build back better for patients in Europe”, realized by the European Federation of Pharmaceutical Industries and Associations (EFPIA) and published in May 2022. Following the worrying divergences in the burden of cardiovascular diseases (CVDs) observed within and across EU countries, the paper argues that better cardiovascular population health can provide a key lever for boosting health system resilience and equity. The paper begins by discussing about CVDs at the European level, looking at the interplay between CVDs and the Covid-19 pandemic. In this framework, the paper provides several recommendations to improve cardiovascular population health with the aim to build more equitable and resilient European health systems which will be better prepared to cope with future crises. Key recommendations emerged in the report concern: strengthen screening programmes for all categories of the population; ensure treatment initiation, maintenance and follow-up; strengthen digital health; foster data-driven decision making. To know more about the paper, click here. To download the full report, click here.
(Last updated: July 2022)