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Monthly Newsletter edited by Cittadinanzattiva-Active Citizenship Network
Civic Activism | Patients' Rights | Consumers' Rights | Support ACN
Year 9th, number 96 - November 2021
Highlight

The impact of the COVID-19 pandemic on non-communicable and chronic patients’ therapeutic adherence across Europe

Click here to fill in the EU survey

After nearly two years it is still urgent to better address the consequences of the Covid-19 pandemic. Evidence collected during the crisis show that the Covid-19 has had a significant impact also on non-communicable diseases (NCDs). Indeed, oncological and chronic patients have been left almost alone for months. 
In line with its long-term commitment on therapeutic adherence, Active Citizenship Network (ACN) is launching an EU Survey with the aim to better contribute – starting from the citizens’ and patients’ perspective – on understanding the impact of the Covid-19 pandemic on non-communicable and chronic patients’ therapeutic adherence.
The aim is to enlighten experienced difficulties, unmet needs and new expectations in terms of continuity of care, access and adherence to therapies from the patient associations’ & advocacy groups’ perspective towards more resilient healthcare systems.
The questionnaire - realized in the framework of the EU project “Therapeutic adherence during the COVID-19 pandemic across Europe: impact, experiences and perspectives from PAGs & relevant stakeholders” - is directed to patient associations & advocacy groups with the objective to collect information on the impact of the Covid-19 pandemic on the adherence to therapies and the access to healthcare systems in their context, based on their experiences and on the information they received, without referring to specific pathologies and starting from patients affected by chronic and non-communicable diseases.

Your participation is very much appreciated as it will allow us to collect a greater amount of information.
Please note that the survey is anonymous and it takes no more than a few minutes to be filled out.
DEADLINE: December 9th, 2021.

For further information, please contact: b.ferraiolo@cittadinanzattiva.it

Read more:

- The EU project “Therapeutic adherence during the COVID-19 pandemic across Europe: impact, experiences and perspectives from PAGs & relevant stakeholders”

- The engagement of Cittadinanzattiva-Active Citizenship Network on Therapeutic Adherence

Focus

This is Living’ communication campaign
In recent months, it hasn’t always been easy to see a doctor. And now, as life slowly gets back to something like normal, it can be difficult to pick up where you left off. Staying in control of our lives can be a daily struggle—especially this year, and especially for those who live with a chronic condition. It’s time for a change. It’s time to work together to take back control. It’s time to focus on our health again.
For this reason, Boehringer Ingelheim Pharmaceuticals, Inc. has developed the "This is Living" communication campaign, to which also Active Citizenship Network has collaborated with other representatives from different patient organizations to show its support on the pursuit of health and wellness in any shape or form, big or small, and to celebrate all the little things that we can do daily to better our health.

 

Many people struggle with motivation for self-care. That’s normal, so if everything hasn’t been going perfectly, don’t be hard on yourself. With a few small tweaks, you can take real steps towards better self-care without even leaving the house.

 

Staying connected to each other is essential. It’s true with our personal lives, our professional lives, and certainly with our health. Your friends and neighbors can help you stay on track—and in turn, you can inspire them through your healthy actions.

 

The medical community exists to help you and wants to see you, so keep up a steady dialogue with your healthcare team. You’ll optimize the care you receive, and your team will have a fuller understanding of your situation.

News
Patients' Rights

EU Survey: "Addressing the challenges of concomitant deployment of COVID-19 and influenza vaccination"
I
n occasion of the annual EU Flu Day, on 14th October 2021, it has been launched a survey focused on this new INFLUENZA vaccination campaign and the concomitant deployment of COVID-19 vaccination. Don’t miss it, have your say! Fill it here, the deadline to complete the survey is the 20th of November.
The initiative has been developed by Active Citizenship Network in the framework of the EU project #VaccinAction 2021 "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”, to support the COVID-19 vaccination environment while enhancing the uptake of routine immunisation. 
It is not a collection of statistical data, but a sort of “online focus group” (that we cannot carry out in person) to bring out the opinions and concerns of the various stakeholders involved, in the different countries. 
The survey is divided into 6 sections (general info, resources, access, monitoring, communication, engagement), it will be considered anonymous, and it will take no more than a few minutes. It is not possible to save the answers during the compilation and the survey must be filled in all in a single session. 
Your collaboration will be fundamental! Many thanks in advance for your time and for further information, do not hesitate to contact the Active Citizenship Network team in the person of Daniela Quaggia.
Read more:
The engagement of Cittadinanzattiva on vaccination.

Stroke prevention & life after stroke, during the pandemic
Did you miss our digital EU training seminar dedicated to PAGs and titled “Stroke prevention & life after stroke, during the pandemic”? Do not worry! The recording is now available here. Click here to download the materials, read minutes and to know more about the panelists. The event has been realized by Active Citizenship Network last 29th of October in the framework of the project “EU PAGs & citizens together in the fight against stroke” and on the occasion of the World Stroke Day.
The main topics addressed were stroke prevention and life after stroke, with concrete examples of activities and tools that can improve the lives of patients and caregivers, with the aim of providing an overview on how to recognize and share the official sources of information to identify, recognize, and combat the main risk factors (pre-stroke) and being 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 the EU and local level. 

Read more:
The commitment of Cittadinanzattiva-Active Citizenship Network in the prevention of cardiovascular diseases (EN – IT)

"Knowing your patients' rights and come back to cure”, an EU social media awareness campaign
In the framework of the project EU PAGs & citizens together in the fight against stroke, Active Citizenship Network has 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 achieve this objective the campaign was co-created with the direct involvement of associations and experts engaged in the training. To see the campaign, please visit the ACN official Twitter channel. Below are the 12 statements:

Consumers' Rights

Profiling of EU energy consumers: psychological and contextual factors of energy behaviour
In occasion of the hybrid meeting (Gent, Belgium, 17-18-19 November 2021), the consortium of the NUDGE project will share insights from the project, survey results & profiling (as drafted in the Deliverable 1.1) to the Advisory Board members. The goal is to make our findings easily understandable by a more general public. Within the report (Deliverable 1.1) that will be presented, the primary aim has been to generate a better understanding of energy consumers’ behaviour in relation to energy efficiency and to further explore factors that either serve as barriers or facilitators to reduce energy consumption. To download the document, click here.

Events

9 Nov 2021: Understanding energy consumers’ behaviour to design nudging interventions
The EU webinar builds on the results of the first EU Project NUDGE activities and especially on the Europe-wide online survey – realized thanks to the great commitment of Cittadinanzattiva-Active Citizenship Network and its constituency – made available in 15 languages and completed by persons in 29 countries which broke fresh ground in the study of energy-related behaviour by operationalizing three theoretical models of human behaviour. The results of the survey, presented in the first NUDGE report, were used to profile energy consumers all across Europe and understand their behaviour in relation to energy efficiency and energy transition more in general.

- What factors are barriers or facilitators to reduce energy consumption?
- Are users’ intentions to reduce energy consumption predictable?
- Can energy consumers be grouped according to a range of psychosocial factors that modulate energy-saving behaviour?

The results allowed to build a theoretical model, where specific intentions to reduce heating-related consumption and more general intentions towards energy-saving were differentiated, identify targeted interventions, primarily of the nudging type, that could leverage those determinants and achieve behavioural change and define 6 profiles of energy consumers, with distinct characteristics that facilitate the selection of (nudging type) behavioural interventions for them. Click here to know more and join the EU webinar. For more information, follow the social media channels (Twitter, Facebook, LinkedIn).

16-18 Nov 2021: Heart Failure Policy Summit
The Heart Failure Policy Network, one of the experts’ associations working with Active Citizenship Network in the commitment on the fight against CVDs at the EU level, is presenting, from 16 to 18 November 2021, the inaugural Heart Failure Policy Summit, an online conference bringing together patient advocates, healthcare professionals, clinical leaders, policymakers and other key figures in system transformation across Europe. One year on from their major investigation Heart failure policy and practice in Europe, the Heart Failure Policy Network is coming together to examine how far their community has come and what is needed to advance meaningful policy change for people living with heart failure. The goal is to empower national heart failure advocates to take action and engage decision-makers in their respective countries. To find out more about the Heart Failure Policy Network, please click here, for the registration click here.

17 December 2021: "Addressing the challenges of concomitant deployment of COVID-19 and influenza vaccination"
A new important step of the #VaccinAction project:  join us in the EU webinar: "Addressing the challenges of concomitant deployment of COVID-19 and influenza vaccination" on Dec 17, 2021, 11:00 AM. Register in advance here.
The initiative has been developed by Active Citizenship Network in the framework of the EU project "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", to support the COVID-19 vaccination environment while enhancing the uptake of routine immunisation. 
The event planned next 17 December was preceded by a social campaign highlighting the main findings of the first survey linked to the project:

20-21 April 2022: XVI Edition of the European Patients’ Rights Day
On April 20th and 21st 2022 (tbc) Active Citizenship Network (ACN) will organize the European celebration of the XVI European Patients’ Rights Day (EPRD) with its traditional format of a big multi-stakeholder conference focused on the role played by key actors in the decision-making process on health priorities.
In particular, just before the end of the Conference on the future of Europe (22-24 April 2022 tbc), the expectations and requests of citizens and Patients Advocacy Groups (PAGs) addressed to the institutions will be analysed. What has been discussed? Why did only a small percentage of the initiatives promoted within the CoFoE concern health issues? How to ensure that the priorities defined in the context of CoFoE will be incorporated in the implementation of the National Recovery and Resilience Plans (NRRPs)? What is the level of involvement of citizens and patients’ associations in defining the implementation process of the priorities that have been identified in the health sector?
The 2022 conference will have a twofold structure: a first day, dedicated to the presentation to the EU Institutions of the outputs of the themes that emerged from health-related initiatives organized in the framework of the Conference on the Future of Europe – as the cycle of initiatives organized by ACN during the second half of 2021 (in June, July and September 2021), with the direct involvement of MEPs, high level experts, healthcare providers, private sector, leaders of civic organizations, PAGs and citizens aimed to contribute to providing a multi-stakeholder vision for a Healthier European Union - ; and a second day, focused on analysing the actual level of citizen involvement by the Member States close to the approval by the European Commission of most of the NRRPs and their implementation at the national level.
Given the current situation of uncertainty, the XVI European Patients' Rights Day (EPRD) will be organized in a digital format, with the hope that it can be transformed into a hybrid format event, with onsite & online attendance.
To know more about the XVI European Patients’ Rights Day, please click here.
To know more about the European Patients’ Rights Day over the years, please click here and here.

 


Director and Editor in chief: Mariano Votta
Editors: Daniela Quaggia, Bianca Ferraiolo, Maira Cardillo, Manuela Amadori, Ana Aviles
Coordination and Production: Giacomo D'Orazio 

To contribute, plase write to: mail@activecitizenship.net
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