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The role of civic society and Patients Advocacy Groups for more resilient Health Care Systems. 10 recommendations towards a European Health Union

In the role of needed changes towards more resilient healthcare systems, it is necessary to recognize the key role of Patients' Advocacy groups (PAGs), citizens’ organizations involved in healthcare issues and, more generally, of all actors that promote health as a common good. This is the message that came to light during the European conference of the 15th European Patients’ Rights Day, which started today and will end tomorrow, involving more than 150 civic society representatives from across Europe, members of the European Institutions and key stakeholders.

The event is promoted by Active Citizenship Network, the European branch of the Italian non profit organization Cittadinanzattiva. and has been realized thanks to the unconditional support of: F. Hoffmann-La Roche LTD, Teva Europe, Boehringer Ingelheim International GmbH and Viatris.

The focus of the 2021 edition of the European Patients’ Rights Day was on the effects of the recent pandemic on national health systems, how patient organizations faced it offering answers to people and actions that should be put in place in order to have more resilient healthcare systems, starting from the 14 rights stated in the European Charter of Patients’ Rights (

From their experiences emerged the great reforming force of civic organizations and PAGs, capable of responding promptly to new needs by managing services, building alliances, quickly signalling necessary normative or procedural changes, mobilizing resources (both human and economic), introducing and promoting practices from which it will not be necessary to go back when everything is over.

“An activism and involvement – in support of the institutions and for the benefit of local communities - that is not mentioned in the context of the Proposal for a regulation of the European Parliament and of the Council on serious cross-border threats to health[1]. The proposal reveals a serious lack which proves as completely unjustified in light of the lessons that we should have learnt from the pandemic”, this was the comment of Mariano Votta, director of Active Citizenship Network, the European branch of Cittadinanzattiva.

Despite the difficulties, this is a propitious historical moment: Member States have just sent their National Recovery Plans in which the issue of health is a key element; in a few days the Conference on the Future of Europe will start and the hope is that health-related issues will be placed at the heart of the debate, as it will happen in the next Global Health Summit planned on May 21st in Rome.

“From the importance that will be given to health-related topics in this European political framework we will understand if ʻthe necessity to create a stronger European Health Union, as underlined by the European Commission President Ursula von der Leyen, is merely a claim or the actual direction taken by the European institutions, and the key point with which we’ll evaluate their work”, concluded Votta.

From the account of oncological and chronic patients during the pandemic, it emerged how they have been left almost alone for several months, a situation that jeopardized 20 years of prevention.

Hence, Active Citizenship Network drafted a Manifesto with 10 recommendations – that has been already signed by 32 associations from 15 countries - addressed to the institutions to remark non-covid patients' unmet needs. Above all, encourage forms of monitoring as “Follow the Money” to monitor together the funds of Recovery Plans that each European country is receiving and engage European citizens to improve health systems. There isthe needto be heard because, as in any reconstruction, the involvement of a large number of active and aware social and civic actors is crucial. The other eights recommendations are: to monitor COVID-19 impact on non-COVID-19 patients; to urgently secure safe access to diagnostic, immunization, screening and treatments; to secure well-resourced healthcare systems post COVID-19; to support the Digital Healthcare transition; to affirm a life-course approach for chronic diseases prevention; to strengthen a ‘One Health approach’ to prevent future pandemic; to develop a Manifesto for the rights of patients living with multi co-morbidity; “Health for all EU citizens” must be placed at the heart of the Conference on the Future of Europe.

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