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Introduction and aim of the initiative
During the second half of 2022, the European Parliament hosted a number of initiatives on the topic of advanced therapies, promoted by the actors who are probably most committed to the topic at European level. From the TRANSFORM MEP Interest Group event on 13 October 2022, during which the “Charter with Solutions to Enable Safe and Timely Patient Access to Advanced Therapies in Europe” was launched, to the event organised by the Alliance for Regenerative Medicine (ARM) entitled “The future of ATMPs” on 29 November 2022, and the initiative of the 'VITA - Value and Innovation for Advanced Therapies' Consortium, realised with the support of the MEPs Interest Group "European Patients' Rights and Cross-border Healthcare", held on 24 October and titled "Securing Equitable Patient Access to Advanced Therapies across Europe", an initiative in which Active Citizenship Network actively collaborated in particular by promoting the Call to Action "Advanced Therapies Medicinal Products revolution & the respect of the patients' right to access to care" signed, so far, by 43 Patients' Advocacy Groups (PAGs).
Background
Evidence collected during the crisis show that COVID-19 has had a significant impact – for instance - on non-communicable diseases (NCDs): indeed, oncological and chronic patients have been left almost alone for several months. From the point of view of an organization which promotes citizens’ activism for the protection of everyone’s rights, offering support to people in vulnerable conditions, it was not acceptable to respond to the immediate needs of citizens facing the Covid-19 pandemic simply by closing services. Instead, alternative organizational solutions are needed to guarantee continuity and quality of care, as well as a resilient health workforce.
Summary
In coherence with its long-term commitment on the topic, and in continuity with the activities carried out in 2021 in the framework of the I° edition of the European project called “Therapeutic adherence during the COVID-19 pandemic across Europe: impact, experiences and perspectives from PAGs & relevant stakeholders”, Cittadinanzattiva APS, through its EU branch Active Citizenship Network (ACN), is committed along 2022 to promote an EU policy dialogue on therapeutic adherence, with the aim to better contribute – starting from citizens’ and patients’ perspective - on understanding the impact of the COVID-19 pandemic on the therapeutic plans for chronic patients, with the ultimate goal of enhancing the actions and reactions implemented by PAGs and relevant stakeholders in front of the community of experts and Institutions.
The starting point well be the main data collected thanks the survey carried out by Active Citizenship Network with the direct involvement of 38 PAGs across Europe. About it, data and recommendations collected show the inadequate attention of institutions and the main stakeholders in relation to access and continuity of care for non-Covid-19 patients, as better explained in the introductory article “Encouraging across Europe the civic & patient advocacy groups’ engagement in the implementation of National Resilience and Recovery Plans to reduce the burden of Covid-19 pandemic on NCDs patients’ therapeutic adherence”, drafted by Active Citizenship Network and published by “International Journal of Epidemiology And Public Health Research” peer reviewed journal.
PAGs actions and re-actions during the pandemic on continuity of care & therapeutic adherence
Different EU umbrella organizations have already collected information on the impact of Covid-19 on therapeutic adherence for patients affected by the same diseases they advocate for. However, a confrontation between them to understand if there are common aspects suffered/observed by patients afflicted by different chronic pathologies is missing. Thus, the aim is to organize an EU webinar involving as speakers both EU Institutions, HCPs, but also selected leaders of the European associations who deal with specific chronic conditions.
Starting from the main outputs of the first edition of the project, the aim is to socialize the common elements or specificities that the pandemic's impact has had on the therapeutic adherence for these groups of patients in order to build a broad picture of this health emergency.
Therapeutic adherence & digital health solutions
A specific focus will be dedicated to the digital health solutions implemented in the last 2 years to improve the adherence to treatments. In fact, It is often stressed, even rightly so, how important it is that patients or those who take care of them are adequately informed about the importance of adherence to treatment and the risks of non-adherence. This role requires coordination between general practitioners, specialists, pharmacists, patient organizations, caregivers, and the entire health system. Many digital health solutions can be a decisive support in this respect, especially for chronic patients.
Because barriers to medication adherence are complex and varied, solutions to improve adherence must be multifactorial and multistakeholder. For this reason, we like to switch “from the therapeutic adherence to the therapeutic alliance”, in which the interaction with HCPs, as also the adherence to treatment, benefit from the new digital health tools.
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The project is realized thanks to the unconditional support of
Last update: December 2022
Background
The Covid-19 pandemic has taught us how much damage an uninformed citizen who perpetrates unhealthy health-related behaviours can cause and how much, on the other hand, an informed and educated patient can make a difference not only to his or her individual health but to public health in general.
Understanding what the risks for some patients with comorbidities are and what, on the other hand, are the benefits brought by anti-Covid vaccination represent two elements that can mitigate the Covid-19 pandemic and other similar events, which cannot be ruled out to occur again in the future and therefore need to find us more ready and prepared.
CONFERENCE ON THE FUTURE OF A HEALTHY EUROPE
“Taking part in the decision-making process on health priorities”
20 – 21 April 2022
14:30 – 16:00 CEST
Given the current situation of uncertainty, the conference will be organized in a digital format.
To virtually attend the conference, please register here (registration is mandatory)
The context
The new frontier of personalized medicine (a medical model that proposes the personalization of health, with medical decisions, practices, and products tailored to the patient) is represented by Advanced Therapy Medicinal Products (ATMP), which offer opportunities for innovative treatment and are classified into four groups:
This project has received funding from the European Union’s Horizon 2020 research and innovation programme.
NIGHTINGALE will develop and validate an innovative set of integrated tools for significant Medical Emergencies response: a multi-technological toolkit that links the different actors involved in managing the emergency and will serve emergency physicians and non-medical civil protection agencies (firefighters, police, but also volunteers and citizens). The goal is to improve pre-hospital life support and triage substantially. In addition, the tools developed will allow a shared response between emergency medical services, non-medical civil protection personnel, volunteers, and citizens by increasing their "field of vision," information sharing, and communication between teams and those affected.
Protecting the value of vaccination during -and after-the COVID-19 pandemic across Europe: impact, experiences and perspectives from citizens’ and patients’ advocacy groups & relevant stakeholders
Summary
Active Citizenship Network (ACN), after the commitment on VaccinAction2021, it's launching its #VaccinAction2022, focused on supporting the need for strengthening adult vaccination in Europe and – starting from the citizens’ and healthcare stakeholders’ perspective - understanding the impact of COVID-19 pandemic and vaccination campaigns on the national immunization plans, protecting the value of the adult immunization and its gains.
Our work on improving vaccination rates follow the Commission’s health priorities stated in the EU4Health 2021-2027 (as well as the fight against cancer and reducing the number of antimicrobial-resistant infections).
This project has received funding from the European Union’s Horizon 2020
"PROPHET - a PeRsOnalized Prevention roadmap for the future HEalThcare" will develop a Strategic Research and Innovation Agenda (SRIA) for Personalized Prevention to support the implementation of innovative, sustainable, and effective personalized programs to prevent common chronic diseases. Cittadinanzattiva ACN is particularly involved in raising awareness among citizens and patients on the potential of Personalized Prevention, specifically on the quality of life and health outcomes improvement, and the possibility of engaging them to define personalized preventive services accepted and used by the public.
In 1948 the World Health Organization defined health as "a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity”.
Today, after more than 70 years, the WHO definition is more relevant than ever if we think of the holistic approach to "global health” at the time of the health emergency that we have been experiencing for about two years.
Cittadinanzattiva APS
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