THE DEGREE OF KNOWLEDGE ON THE TOPIC OF "GLOBAL HEALTH" AND THE MAIN THEMES RELATED TO IT
From 21st to the 23rd of September 2022, the first meeting of the European Commission funded project PROPHET was held in Rome at the Università Cattolica del Sacro Cuore (UCSC), the project coordinator as part of the Horizon Europe programme.
What is the goal of this European Project?
The Personalised Prevention Roadmap for the future healthcare, that will be co-created together with a large panel of stakeholders gathered in the PROPHET Stakeholder Forum, aims at supporting the definition and implementation of innovative, sustainable and high-quality personalised strategies that effectively chronic diseases.
The European project FACILITATE (FrAmework for ClInicaL trIal participants' daTA reutilization for a fully Transparent and Ethical Ecosystem) officially started on January 1st, 2022.
FACILITATE aims to develop an ethical, legal and regulatory framework that allows the return of clinical trial data to trial participants and other health professionals involved in their care, it also wants to create a process that allows the data collected to be reused also in future research.
Here you can find the first testimonials of some of the interns/volunteers who have collaborated with Active Citizenship Network throughout the years in the framework of the “Active for Young Professionals” multiannual educational and training program.
In my recent training experience with the Active Citizenship Network office, I've had an incredibly enriching journey that significantly expanded my horizons. Engaging in two major projects alongside individuals from across Europe not only broadened my perspective on social issues but also exposed me to diverse problem-solving approaches. Eya |
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Student in political sciences, interested in the changes in the expressions of "traditional" democracy, thanks to the experience at ACN, I was able to begin the study of a nascent European phenomenon to go back in subsequent years to its origins. A speaker and events manager, I nowadays work for the European Parliament at the Maison Jean Monnet in Paris, which is part of the House of European History in Brussels. Debora |
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I started my experience at Cittadinanzattiva - Active Citizenship Network in March 2020, with the outbreak of the Covid-19 pandemic. This situation did not allow me to attend the working environment as I wished, but, despite this, I immediately felt involved in all activities, which included drafting new articles, participating in meetings and webinars, helping in the organization of public events, and establishing new partnerships and collaborations. All the people I interacted with supported and respected me throughout the whole experience and made me feel in a serene environment that was open to discussion and innovation. Despite the difficulties due to Covid-19, ACN has offered me many different experiences in tune with my interests that have allowed me to measure myself with a new and fascinating reality. Concerning the working environment, at the end of this experience at ACN, I can say with great confidence that I have gained awareness of my abilities and feel more advantaged than many of my peers. Concerning, instead, the world of the EU, the initiatives and projects I worked on made me feel part not only of ACN as an organization, but of a European and international network actively working for the protection of citizens' and patients’ rights. Working at ACN has been a more than positive experience and, in this period of global difficulty and emergency, the best I could ask for. I highly recommend it. Maira |
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My internship experience with the Active Citizenship Network, the European network of Cittadinanzattiva, has brought me closer to the socio-political sphere of Europe and to patients' rights in a very complicated period of pandemic, in which the working environment has been forced to change completely. Through the projects in which I immersed myself during my internship experience, such as the European Civic Prize on Chronic Pain, I was able to help patients and organizations to have a voice in a period in which so many people felt abandoned. It has undoubtedly brought me closer in knowledge and affection for the collaboration of civic organizations and with institutions such as the European Union and has also shown me how much a citizen can make a difference in such important aspects, through civic activism, collaboration between European citizens, and by providing a voice to so many individuals. The internship helped me learn a great deal of the ambitions and projects that European institutions deal with, especially in regard to the rights and opportunities for patients and fragile subjects which became even more important during the Covid-19 pandemic. The internship also opened up a new level of knowledge for me in the background of European affairs and institutional levels, and also helped me understand the lively and transparent relationship that the EU governing entities wish to have with the citizens, including providing them opportunities for employment and greater civic activism and defending the rights of European citizens. Gianluca |
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During these months I have lived an extremely enriching and formative volunteering experience within the Active Citizenship office. The path I have taken in ACN has helped me to broaden my interests and improve my skills in the social field. Thanks to this experience I understood the value of networking, I had the opportunity to get in touch with doctors and researchers from various European countries and I acquired a wealth of new knowledge and skills that I will treasure in my future. Furthermore, thanks to this work, I had the opportunity to test myself by undertaking new work paths that allowed me to face new future possibilities. I am very grateful for this experience and highly recommend it to anyone who wants to deal with this working world. My experience with ACN has pushed me to want to know, in a much more in-depth way, the functioning of European policies related to citizens' rights, especially in the health sector. I had the opportunity to deal with local health policies within some European countries and this allowed me to learn different models from ours and through which it is possible to enrich our skills on the subject. The fundamental element that I made mine as a result of this experience undoubtedly concerns the importance of having access and promoting correct information regarding the sphere of rights and protections of citizens in the field of health and which are of public interest. Giulia |
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During my internship with Active Citizenship Network, I had the chance to see how civic participation can be a decisive factor in EU policymaking. From the start, I received lots of responsibilities and projects, such as the Launch of the second term of the MEPs Interest Group “Cross-Border Healthcare and Patients’ Rights”, which we held at the European Parliament. Thanks to my stay at Active Citizenship Network, I was able to understand how important discussion among different stakeholders takes place in order to further common goals, such as in the field of Health Policy. My stay at Active Citizenship Network allowed me to have a look at how Civil Society Associations cooperate across Europe, and how synergies are formed to reach common goals aimed at strengthening citizens’ rights and empowerment. I learned how individual grievances, such as infringed rights of patients, can be addressed at the European level, and how making the civic voice heard is essential to the successful functioning of the European Union. Riccardo |
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During my period of work at Active Citizenship Network (ACN) I represented the interests of an organization that pursues common interests for raising awareness among European legislators on various issues. It was an exciting challenge that made me learn a lot about what Advocacy means to European institutions. Furthermore, having assisted the Director Mariano Votta in fundraising activities here in Brussels taught me how NGOs interface with the private sector and raise funds to carry out their activities. A useful experience to understand how and when the private sector uses financial resources to promote advocacy initiatives for everyone's interest. By carrying out these activities, I learned skills that will be useful to me throughout my professional career. I especially thank Mariano, Daniela, Bianca and Giuseppe for making this experience possible. Federico |
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I would have never thought that at the age of 30 I would have such an enriching and formative exchange experience outside of my country. The path I undertook as a volunteer for ACN has first of all formed me as a person, helping me to become aware of my abilities and potentialities, but also of my interests and language skills. Thanks to the experiences I have lived, I have improved in my path as a volunteer, I understood the importance of networking at the European level and not only at the local level, and I understood how necessary it is to build synergies to be more effective towards the achievement of our goals as volunteers. My experience with ACN has led me to study how European policies work, and all those policies that serve activists and volunteers. I also got to know the European model of participatory democracy which, although it still has room for improvement, represents a chance and a fundamental opportunity for us citizens to have our say on so many local issues that can be developed in the European context. In a world in which we are increasingly interconnected and interdependent, these aspects are fundamental for obtaining rights, protection and correct information for the benefit of citizens and patients. I met many people from all over Europe, and I acquired new skills while improving my English. In addition, I understood my talents and the career paths I wanted to take. As a result, I brought unexpected results to my local association where I was able to "disseminate", to use a European term, the ideas I had developed. ACN offers the possibility to live enriching and formative experiences...in short, to "Think globally, act locally!" Sara |
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Working as project Assistant at Active Citizenship Network (ACN) was a very enriching experience. During my time there, I was mostly in charge of dealing with healthcare and patients’ rights at the European level. More specifically, I worked on different projects on patients’ safety and empowerment, e-health, vaccination, sustainable healthcare, and cross-border healthcare rights. Since the very first moment I was given numerous responsibilities, which allowed me to develop my organizational and management skills. The various tasks I was assigned included helping in the organization of public events, writing articles and content for the website, drafting the minutes of public events, preparing memoranda of understanding and partnership proposals, among others. Moreover, I was able to assist my colleagues in in the organization of the 13th edition of the European Patients' Rights Day as well as to attend public debates at the European Commission. Above all, I was mainly responsible for carrying out the second edition of the bi-annual research-project at the European level “EU Civic Prize on Chronic Pain - Collection of good practices”, which seeks to highlight existing good practices addressing the struggle against pain in several European countries. While working, I had the chance to cooperate with a multitude of different stakeholders, including EU institutions, NGOs, professional associations, pharmaceutical corporations and universities. This also allowed me to take advantage of my language skills to get in contact with people from all over Europe and consequently expand my network. I believe that this working experience has been fundamental for my personal and professional growth. Indeed, it allowed me not only to improve my research and analytical skills, but also to be actively involved in the international arena, cooperating with a multitude of international stakeholders and understanding how social and political interactions take place at both the national and international level. This internship helped me understand what I wanted to study in my master’s degree and in what field I would like to work in the future. Taking into account my whole experience at ACN, I would strongly recommend it to anyone interested in this field. I really enjoyed working with Mariano and Daniela and I am confident that every experience at ACN will be as positive as mine. Manuela |
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I started the collaboration with Cittadinanzattiva Onlus - Active Citizenship Network Brussels’ office in October 2016. I collaborated on European policies regarding civil society and the protection of patients’ and consumers’ rights and on project activities. Among all, the participation in the evaluation focus group of the Europe for Citizens Programme, the organisation of the Citizenergy project event at the European Parliament and the organization of a session of the European Sustainable Energy Week 2017. An added value was to personally assist the ACN Director, Dr. Mariano Votta, in institutional meetings at the European Commission, such as the European Consumer Consultative Group, with Members of the European Parliament and with various stakeholders from both the public and the private sector. The collaboration with Cittadinanzattiva was a fantastic opportunity that drew me to the world of European institutions, associations and advocacy, developing interests and know-how that are integral part of my working life. Giuseppe |
(Updated: December 2021)
Active Citizenship Network’s Community, shortly “ACN Community”, was initiated in 2020 as a development of the “Active for Young professionals” program, launched back in 2014.
This community distinguishes itself as a network of individuals rather than a network of associations aiming at fostering the relationship of ACN with the single individuals that ACN has met and gotten to know in the last years through the program.
Cittadinanzattiva/Active Citizenship Network, in the context of the “Active for Young Professionals” program, established two educational partnerships.
The first with John Cabot Universitywas formalized on September 8, 2014 to provide internship opportunities to the university’s students. John Cabot is the main American private university in the heart of Rome for both Italian and international students coming from more than 60 different countries. John Cabot University and Cittadinanzattiva Onlus/Active Citizenship Network both share the common goal to facilitate the intern’s professional choices by providing direct knowledge of the work environment and providing a complete training with appropriate study and work experiences. If you wish to know more about landing a job with an NGO, click here to read the article and click here and here to view the collaboration between ACN and John Cabot University. For further information please read our statement here.
29 September 2021
11.30 to 13.00 CEST
In line with its commitment on internal areas at national level, Cittadinanzattiva is taking part to the AHEAD project, which started in April 2021.
The role of civic society and Patients Advocacy Groups for more resilient Health Care Systems. Lessons learned toward a European Health Union
6th May 2021, from 10:00 to 12:00 CEST
Digital Conference
DAY 2
The resilience of HCSs during and after the pandemic
Moderator:Jennifer Baker, EURACTIV
brief introduction thanking people for auditing and summarizing the main topics of discussions and outcomes of the previous webinar on May 5th, 2021
highlights the timing of this event, which will be followed by the Conference on the Future of Europe and the Global Health Summit
10:00 – 10:40 Opening remarks & keynote speeches
MEP Tomislav Sokol (EPP)
We need a more systematic approach of the EU – member states cannot solve all issues alone, but a division of competences is needed
The crisis has showed us that we need a better coordination among Member States (MS):
Strong protocols and rules on how to enable free movement of medicines and equipment supplies in times of health crises (i.e., Green pass)
Stronger institutional framework --> better organization, stronger structures, common organizations of supplies and products that need to be stockpiled at new levels in case of future crises to avoid shortages that characterized the covid pandemic
Big differences exist among MS --> need to put all countries in the same position
Make same policies across the EU --> equal level of infrastructure and assistance through EU budget and cohesion policy
Need to have a better exchange of (health) data among MS
Therefore, there exist many possibilities to act for the EU and its MS. A common European approach is needed: more coordination, more common procedures, more investments to make systems more equal and efficient --> EU can really help health care systems in the MS become more resilient in the long run
Vytenis Andriukaitis, former European Commissioner for Health and Food Safety and leader of the Lithuanian delegation to the Convention on the Future of Europe
“Everyone has the right to timely access to affordable, preventive and curative health care of good quality” --> better access to care should be included in action plans
“Leaving no one behind” – new promising motto of the EU with many implications --> better coordination needed
Civil society and PAGs are demanding better involvement and participation in healthcare
Healthcare shortages cause huge problems in countries (lack of equipment, personnel, doctors, etc)
Health sector can be the most dynamic driver to build a social cohesive Europe
Today, efforts to cooperate at EU level in the field of rare disease are on voluntary basis– not equally prioritized among MS
Need to share competencies between EU and MS (as in food safety)
Need for European insurance fund to cover cancer and rare diseases
More generous public support needed for people who need innovative treatments, as this is a fundamental right of all citizens, who need to be treated equally
Only EU can prevent inequalities among MS
European leaders today are much more sensitive to patients’ demands than 2 years ago
Consolidated Version of the Treaty on European Union – Art.3: only common safety concerns are shared competencies of the EU?
Representing the Manifesto for a European Health Union --> need millions of signatures, not thousands
Voices from patients are much more fragmented than in other sectors --> need to consolidate PAGs and Civil Society
The Manifesto shall promote a universal health
Paola Testori Coggi, Chair - T20 Task Force Global Health and Covid-19 and Special Advisor - National Technological Cluster on Life Sciences ALISEI
The pandemic can be and must be the catalyst of the fundamental mechanisms of response --> need a more coordinated public health policy in all countries
the Global Health Summit will be the first occasion to discuss how we can improve our resilience. It will have 3 areas of focus: effective cooperation, health systems, resources
Effective cooperation: exchange of data – inadequate alert system that did and does not work for old and new pathologies. Influenced by politics --> need a system that allows to share and analyse information more rapidly and efficiently.
international awareness that we need better exchange of information and better alert system (epidemiological surveillance) to improve responsiveness and interventions (tests, vaccinations, etc. according to international protocols and according to sex and age)
Health systems: not adapted to guarantee proper response, continuity of treatment, and normal activities of disease prevention during a health emergency
Hospital focus and reduced territorial medicines --> in case of a widespread infectious diseases, hospitals need to play an important role, but patients have to be assisted also outside the hospitals by family doctors and other practitioners
Resources: how we can mobilize domestic resources?
proposal by the commission has been presented, now it’s the turn of the MS to demonstrate that they are ready to transform proposals of EC into mandatory policies
the scientific world already taught us what it means to work in a unified manner (i.e., international database monitoring all the sequences of the virus) --> politics should follow the example of science
Therefore, the responsibility to protect global health lies on every country and citizen. Global health security needs a global solution.
10:40 – 11:50 Roundtable discussion
Pascal Garel, Chief Executive - European Hospital and Healthcare Federation (HOPE)
Main message:need tofocus on integration of care and need to look beyond short-term care
Paul De Raeve, General Secretary - European Federation of Nurses Associations (EFN)
Main message: If we want to be prepared for whatever crises comes to us, we need to improve the nurse workforce. Though the number of nurses and physicians remains too limited, we have the enthusiasm, courage, and energy required to stay and help as many people as possible. However, we ask EU leaders to support nursing professions and not leave them behind”.
Neda Milevska-Kostova, PhD - Vice Chair, International Alliance of Patients’ Organizations (IAPO)
Main message: The direct involvement of patients in addressing other patients’ needs can help build more sustainable health care systems.
Marco Annoni, Coordinator - Ethics Committee - Fondazione Umberto Veronesi and Researcher - CID-CNR Interdepartmental Center for Research Ethics and Integrity
Main message: Ethical preparedness is a key component of the response to the pandemic. The new discussion on morally important issues linked to the pandemic (ethical issues of clinical trials, mandatory vaccinations, assistance to less developed countries, etc.) can lead to the development of better guidance and practices. Resilience has to be built at macro level.
Dorejd Kastrati, Head of Global Scientific Affairs - Boehringer Ingelheim International GmbH
Main message:During health emergencies, we cannot forget patients living with chronic and rare diseases.
Roundtable Discussion:
1) Digitalization of healthcare and other technologies as a possible solution for better health care systems.
- Neda Milevska-Kostova:
Digital transformation can be advantageous, but it is supposed to remain a tool and not a “to go to”.
The digitalization can help us reduce errors and improve exchange of data; but we should not forget that interactions need to remain intact --> give more space to healthcare providers to be able to communicate with their patients to offer better care
- Pascal Garel:
Covid has shown we are very poor in data quality today (i.e., different levels of mortality in Europe)
Digitalization is already there --> technology
- Paul De Raeve:
Digitalization risks drawing nurses and doctors to all kind of projects except patients’ care
Digitalization and AI for clinical purposes are advantageous only they it keeps doctors and nurses where they need to be
The data we got until now are not correct, but totally biased (not high quality) – we are making policy decisions on wrong data
- Vytenis Andriukaitis:
There is a big gap between developers and realities in hospitals: need to understand that being on the fields concretely is necessary to understand what needs to be developed technologically.
Social and healthcare systems have systematic approaches to care only in few countries
Data collection is a good tool but doesn’t replace experience
Health ministers only meet once a year because health care systems are not considered a common matter--> time to think that we need to discuss new possibilities – MS need to share data, information, and possibilities
- Paola Testori Coggi:
A change at EU level will take 4-5 years to happen; civil society and PAGs need to push MS to adopt proposals on the table now --> change needs to occur in MS and to be quick
- Vytenis Andriukaitis:
We need to go in both directions (EU and MS). The EC has very strong tools to enhance shared responsibilities.
It is time to encourage changes for the future of Europe now
- Pascal Garel:
One of the main issues is that some countries do not spend enough money on social and health care
European organizations are here to help at national and regional level
2) What ethical considerations there are around funding health care?
- Marco Annoni:
It is crucial to project how money will be spent
There is a need to act systematically: how much money we want to devote to health?
In many countries, clinical research and experimentations are largely underfunded --> resources and scientific funded are needed (Es: impact of mental healthcare during the pandemic – less than 1% of University curriculum was spent on it)
3) What has been the experience of chronic patients with resources and funding?
- Dorejd Kastrati:
It is fundamental to spend on research and development
- Neda Milevska-Kostova:
Resources are not just financial --> there are other ways we can support our HC systems
Need to invest more in prevention (screenings and preventive health services but also promoting healthy choices and healthy lifestyles)
Resources in kind: expert patients should be more involved and allowed to share their experience with other patients, thereby giving answers that healthcare system cannot provides --> expert patients can help sustainability of heath care systems
4) How can we allocate the right resources in the right place at the right time?
- Roberto Faccincani:
Very hot topic now = use of recovery funds
First approach to funding is always towards innovation& digitalization --> but only makes sense if it saves time of practitioners, not if it risks doing the opposite
We need to remember that technology will always fail during disasters/emergencies --> need concrete classical methods --> investment in people (education and training of professionals, etc.)
- Paul De Raeve:
The EU has a main commitment in resource and funding
Doctors and nurses cannot stop their work if technology issues occur
It takes years to “develop” a nurse/doctor and right now they are not enough
5) Let’s focus our mind a bit more on the positive consequences of the pandemic and the lessons learnt for our health care systems
- Marco Annoni:
We need to start thinking differently about healthcare and our relationship with the environment, the way we interact with other species, etc. --> coordinated and systemic approach at EU level
We need to be more prepared, at least individually, to face a crisis like this
6) Now there is a big focus on Covid-19 patients; will the situation return to like it was before?
- Dorejd Kastrati:
We will not go back, but we need to consider the positive effects of the pandemic and what we have learnt from it
We will continue to invest in research, digitalization of science, clinical trials, etc. and engage more with policymakers to facilitate digitalization and the creation of frameworks for better data collection and analysis
7) What do we need from the people?
- Neda Milevska-Kostova:
Need to rethink our values: caregivers, citizens and patients should be allowed to play a greater role
Need a better knowledge of how we can prevent and treat diseases -> possibilities for citizens to learn and share
Alleviating pressure on healthcare system from preventable diseases can contribute a lot to properly use resources of healthcare systems
No patient can replace health care providers but they can complement their job with their experiences and knowledge --> earlier detection of diseases, prevention of complications, etc.
8) Connection between the pandemic and disaster medicines?
- Roberto Faccincani:
We need to ask ourselves how much the pandemic has been managed by disaster experts
We will change our way to approach disasters – > many peoples and experts were involved but who was in charge of learning from previous experiences? We lack education and perspective on disaster management and disaster medicine
- Dorejd Kastrati:
Everyone wonders why there has been a second wave
Need to learn from the first phase for being prepared, resilient
We need to wonder “what have we learnt?”, “Are we prepared for the future?”… The answer is probably still “no” --> need more cooperation
9) What does the One Health Approach mean to you?
- Paola Testori Coggi,
First, it means surveillance: need to monitor developments in environmental situation, animal health, and all threats coming from the animal world;
Second, it means proper management of the emergencies: what is the impact of our actions?
The One Health Approach is a horizontal approach which has to be kept in mind constantly and everywhere.
11:50 – 12:00 Final remarks
Mariano Votta, Responsible for EU Affairs – Cittadinanzattiva-Active Citizenship Network
Please read the “Final remarks” document
Audience Questions:
- Do you think thar it should be possible all countries register DATA in the same way, with the same programs and technology?
- Right to Information - but HOW can patients, who live in a country where personal medical info is not part of data collection, access this important health information in order to make shared decisions? - (e.g., breast density has implications on mammography screening)?
- How is it with the member countries right to self-determination within social areas, including health care? Today there is no follow-up of recommended national guidelines, e g rare diseases, so how will a greater cooperation within health care happen for real?
- We also need a pan European harmonized and digitalised shortages reporting and notification system based on national systems but with common data fields and definitions. In this process, two-way dialogue between authorities and industry is crucial to ensure predictability and ultimately access and better react in case of cross border shortages.… would this be an agreeable approach for panelists?
Audience Comments:
“High quality patient health education is key. If patients are asking for certain health information, in order to be advocates for their own health, systems MUST provide this.”
“Speaking for resources, I always keep in my memory the Commissioner’s intense references to the poor 3% on preventions.”
“As a breast cancer patient (diagnosed early in France due to supplemental screening on dense breasts), we work globally at Breast Density Matters UK to raise awareness of the importance of breast density on screening with the aim to detect breast cancer at the earliest stage possible.”
“We NEED to REALLY listen to Patents' Experience/Needs/Expectations!”
“The political leaders MUST support the health staff, whose work and qualities are crucial for the health system to function.”
“I understand the need for data - but I'm going back to basics - Radiologist's role is to view images and report the findings to patients; it is the patients' right to this information - in every country!”
“Happy to hear about systematic, or better systemic approach... It the key challenge towards Health Europe”
“Great presentations and debates. But ACTION is needed. Patients do not have the time to wait for decisions. #TimeToAct”
“Good point, we rise arguments from the change of the treaty aiming at an improvement of Health policies and systems and vice versa. We must try for both at the same time”
“Patients have to fight for their own medical records/information - this NEEDs to be addressed as a matter of urgency.”
“I think the Patient Movement must act more together to actually reach results. AND together also with the industry and professionals in Health care.”
“At the European Society of Radiology, Patient Advisory Group (I am a member); we work alongside healthcare imaging professionals to develop patient-focused initiatives and improve care for patients.”
“Greek figures: prescriptions on antidepressants increased per 100% last 12 months (some say 300%) So, pandemic creates interesting perspectives for some.”
“Source: Prof. David Hunter, Harvard: 'We have the knowledge and technology to reduce global cancer deaths' - yet in some countries, we have technology - and do NOT use it.”
“We are working against Covid-19 infodemia and we have seen good results in our country.”
“This is an essential point: patient peer support is invaluable especially for chronic diseases and pluri-pathologies.”
“Patient demands on peer support increased significantly in recent months.”
“Yes, prevention is key. But it is a very complex, multi-sectorial issue and it requires much more financial support.”
“Judy Birch, Pelvic Pain Support Network- patients reading evidence-based information and feeding back to us (sometimes too late, e.g.: after surgery)”
“We want from the governments to understand that health is crucial for the economy, but even citizens themselves must understand the role of health in their life and be active on the health issues. And I think our role as civil society is important here. The last 20 years have faced us with a lot of pandemics, so we better prepare our self”
“Agree with Arlinda, patients have rights but also responsibilities, and this is compatible with the principles of patient empowerment and self-management. Teach people to fish / help people to help themselves.”
“I work voluntarily for four organizations. It is not enough for organizations to have a 'tick box' including patient representatives. The need to LISTEN to their good and bad experiences and ACT.”
“Management starts for philosophy. Even Biden spoke about braking patents. This is a real challenge for the EC, if not, for the EU then.”
“Industry could be resilient also thanks to the two-way communication between authorities and industry to have visibility and predictability - this is an important lesson learned moving forward and this aspect is lacking in the Health Union package of the Commission for instance …”
This document has been drafted by Manuela Amadori, a member of the ACN staff.
The role of civic society and Patients Advocacy Groups for more resilient Health Care Systems. Lessons learned toward a European Health Union
5th May 2021, from 10:00 to 12:00 CEST
Digital Conference
DAY 1
The health challenges faced by non-covid patients
The 15th European Patients’ Rights Day (EPRD) event was celebrated with a two-days webinar on 5 and 6 May 2021 by Active Citizenship Network (ACN) with its conventional format of a large multi-stakeholder conference focusing on the value of citizen participation and a multi-sectoral approach to acting on current and potential cross-border health threats.
The theme of the event for both days was, “The role of civic society and Patients Advocacy Groups for more resilient Health Care Systems. Lessons learned toward a European Health Union”.
The moderator of the conference, Brian Maguire from EURACTIV, welcomed and introduced the conference and thanked all panellists and organizers for participating in the event. Also, he thanked listeners and the audience.
10:00 – 10:30 Opening remarks & keynote speeches
The first speaker, Mariano Votta, responsible for EU Affairs at the Cittadinanzattiva of Active Citizenship Network, said that Cittadinanazattiva has been organizing this event since 2007 for the health care system and patient’s rights. He shared his first memory that how he heard the first death in Italy of COVID-19 and agreed that we all have been affected in many ways by the covid pandemic since last year and continue going on. Although, he thinks that our scientific progress, vaccine inventions, actors and health care workers who are fighting the pandemic are a positive sign for all of us. But we are still working on civic data and the effects and consequences of COVID-19. According to him the non-communicable disease and patients are more affected by the covid virus. At the same time, civic organizations have been working and putting valuable inputs to fight this pandemic in Italy. These organizations are active in advocacy too for cancer and kind of deadly disease and the various vulnerable people. They are helping to make much resilience to our health system. This is a sign of importance for the civic organization for this pandemic, especially in health sectors. So, it is important to strengthen and support those organizations. He further said, we should learn from this pandemic to fight better with future pandemics. Also, he mentioned a general discussion of health issues in Italy and the European Health Union to strengthen European Political Framework. In the end, he indicated the importance and need of precautions in general for this pandemic.
The next speaker was Brando Benifei, a member of the European Parliament (MEP) from the Social Democrats Group. He appreciated this annual event and its importance, especially in this phase of a pandemic. He mentioned his support for health issues as an MEP and indicated the situation of health and economy in Europe. European citizens are more aware and active in health and related issues according to him. The right to health and the right to update for everyone must be strengthened in Europe. Also, he mentioned various EU health budgets and regulations, which are helpful to protect communicable and non-communicable diseases. For him, sufficient data on health is essential for any future health plans. He also mentioned the demography and ageing populations of Europe in long run. In the end, he indicated the importance of policymakers in Europe and member states.
Pierre Delsaux, Deputy Director-General for Health at Directorate-General for Health and Food Safety (SANTE) at the European Commission, talked about investments in health sectors that matters. The second message from him was ‘more cooperation at EU level, that we learnt from this pandemic and that is fundamental for EU and health issues. The last message was more involvement of digital sectors in the health systems of the EU. He requested that we should not ignore other diseases in this pandemic like mental diseases. He talked about the pharmaceutical strategy that ‘we all should get medicines on time’ at the EU level. Artificial intelligence is very essential for health sectors and data protection. In the end, he said that we can succeed only after enough funding in the EU on healthcare.
10:30 – 11:05 Concrete experiences across Europe
The first speaker of this session, Kathi Apostolidis, President of the Hellenic Cancer Federation (ELLOK) and Board Member of the European Cancer Patient Coalition (ECPC), explained how this pandemic has affected cancer patients and related sectors. The diagnosis was getting tough and online working was not that familiar before the pandemic. Fear and doubts were common for the cancer health workers. For patients, it was not possible to travel from small villages and small cities towards metro cities where enough cancer equipment was available. Although, cancer health workers worked hard to learn new skills and cooperated with other countries and their specialists to solve the issues and to continue cancer treatment in this pandemic.
The next panelist was Alina Constantin, Patients council and International coordinator of the Ligue contre l'obésité in France. She talked about her organization that works for obesity. The organization was defending patients right during the pandemic. Because obese people are more vulnerable. Although obesity was still not a disease in France. There was a procedure for people with obesity to work from home, but it was annulled by France government, that was strongly opposed by her organization. And they were succeeded to bend the government that announced a new degree on the obese people that they can work from home in certain situations. Another victory for the organization was to make a schedule of vaccination for people with obesity.
Stefania Vallone, member of the European Program for Routine testing of Patients with Advanced lung cancer (EPROPA) and board member of the Women Against Lung Cancer in Europe (WALCE) Onlus, briefed about her organization. The WALCE organization is based in Italy and mainly works for lung cancer. EPROPA was created by the organization to connect other regions in Europe for lung cancer issues to fasten molecular testing and clinical trials. EPROPA has opened molecular and another testing for Europe. But the high cost of this testing is a big issue and that is why fewer people are getting benefits of these services. That affects the rights of people and the rights of treatment.
Ana Castellanos, Responsable de Proyectos at Plataforma de Organizaciones de Pacientes (Spain), talked a little bit about her Spanish umbrella organization. The organization works to raise patients’ rights and voice. Emotional impacts on people after the pandemic was another issue of consideration for the organization. Legal advice, home delivery of medicines and work from the home facility for patients from the organization were other effective services and inputs. The organization succeeded in the inclusion of non-chronic diseases with covid patients’ level of care and have been trying to fight more for patients’ rights and treatment of other diseases.
11:05 – 11:55 Roundtable discussion
The ‘round table’ discussion got started with Alex Filicevas President of All. Can International and Executive Director at the World Bladder Cancer Patient Coalition. He talked about the issues and problems of cancer patients that are getting problematic in this pandemic. He saluted to various patients’ organizations who are doing great jobs in this period of need.
Daiva Brogienė, Vice President and Rapporteur on Patient Safety at Standing Committee of European Doctors (CPME), talked about cardiovascular patients and their rights in the covid period. Because the availability of health care services has been changed after this pandemic. According to her cardiovascular patients should be treated in the emergency health care system even in this corona pandemic and emergency.
Lobna Salem, Head of Medical Affairs, Developed Markets & JANZ at Viatris, explained the work of her Company to strengthen collaborations between the public and private sectors. She indicated NCG patients and how much they are getting effect by covid-19. She mentioned how digital tools are valuable in this pandemic.
Erick Tyssier, Senior Director at Head of Government Affairs at Teva Europe, expressed three points. First that the real heroes in this pandemic are doctors, nurses, medical staffs, health workers, health technicians and medical community. Second, we should treat at the same level both covid and non-covid patients. Third, we must be serious for medical and health care systems for future pandemics.
Sebastian Arias Zuluaga, Global Access Policy Leader from Oncology at F. Hoffmann-La Roche LTD, quoted most of the comments by earlier speakers in terms of policy designing, framework and effects of policies in this pandemic period and for the rights of patients in general.
11:55 – 12:00 Final remarks
The moderator, after thanking everyone for participating in the first day of the Conference, gave the floor to Antonio Gaudioso, a member of the Italian Scientific Committee for the surveillance of the Covid-19 vaccine and President of Cittadinanzattiva, for the final remarks. Antonio thanked all panellists and all participants of the event. He mentioned that we all are talking about common problems, issues and goals and we are talking about common objectives to learn and make them better in the future. He shared common fears and positivity at various levels to handle diagnostic, screening, and pandemic situations. He thinks concrete involvement and accountability is essential for the future generation. Strong cooperation among civic bodies and public and private institutions are strongly needed to fight for health issues and patients’ rights to build a sustainable European Framework.
This document has been drafted by Ashique Ali, a volunteer of ACN.