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


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

    • Need a better allocation of resources in MS --> need to simplify some procedures and healthcare policies, more cost-effective solutions
  • 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)

    • Increase investment needed to improve people’s healthcare
    • 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.

  •  Roberto Faccincani, Executive Board Member - European Society of Trauma and Emergency Surgery (ESTES)
    Main message: We should ask ourselves why we were not able to understand the scenario of the first wave of the pandemic and we were not prepared for the second wave.
  • 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.

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