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We are proud to announce the #FACILITATE Project website is online! FACILITATE is a 4-year project launched by the Innovative Medicines Initiative (IMI), whose primary aim is to enable clinical trial participants to access and make use of their health data gathered during studies to allow a better shared medical decision-making with the health professionals involved in their care and to create a process that will enable data to be also re-used in future research. Its overall goal is to develop an innovative data-sharing and re-use process within a General Data Protection Regulation (GDPR) compliant and approved ethical framework, not only to allow the access and portability of patient data but also to change the role of patients in the strategy and design of clinical trials with many new rights and responsibilities becoming an active component of drugs’ development process. Find out more about the project here. Join our pool of Stakeholders.
Active Citizenship Network, together with other patients’ organizations, actively participates in the ‘This is Living’ communication campaign with the aim to support those living with chronic conditions, providing knowledge and experience from a variety of perspectives. The recently online website of the communication campaign has been developed by Boehringer Ingelheim International GmbH in collaboration with representatives from several patient organizations and others, to improve quality-of life.T
‘This is Living’ is a collaboration of organizations, including Active Citizenship Network, who recognize that chronic conditions are a worldwide concern affecting individuals, their loved ones and society at large. We want to make a difference and help improve each day in some way. Small steps, big aspirations. ‘This is Living’ is about Inspiration, Tips and Advice, and Community.
Active Citizenship Network has signed an official agreement with the World Federation of Incontinence and Pelvic Problems (WFIPP), a global platform mostly comprised of patient advocacy organizations, doctors, non-government organizations, and non-commercial entities, interested in acting as a helpful resource for all stakeholders, patients, families, carers, HCPs and institutions who are in some way involved in the patient pathway relating to incontinence. ACN and WFIPP have committed to empower citizens and patients in their participation in policies and dialogues on topics concerning, in particular, reduction of health inequalities, promotion of rights and a higher quality of rights of patients living with incontinence and pelvic floor dysfunction.
Active Citizenship Network is glad to announce the signing of a Memorandum of Understanding with the Federation of European Academies of Medicine (FEAM), a network of academies promoting cooperation between national academies of medicine, pharmacy and veterinary science across Europe. ACN and FEAM have agreed to collaborate to improve the health and safety of EU citizens by promoting the empowerment of citizens in European public policies, activities, and dialogues surrounding key healthcare issues as a key step towards a more inclusive Europe.
Active Citizenship Network is glad to announce that it has recently signed a new Memorandum of Understanding with the Cyprian Universal Patients' Rights Association (UPRA), the only organization in the northern part of Cyprus whose mission is based on patients’ rights and who is offering support for patients and their relatives in their struggle with the violation of their rights. UPRA’s vision and mission take their essence from the European Charter of Patients’ Rights. For this reason, ACN and UPRA have become partners to support each other’s initiatives on the topics of the protection of patients’ rights stated in the European Charter of Patients’ Rights, reduction of health inequalities, patients’ empowerment, promotion of public health as a common good and have joined forces to raise awareness on the needs surrounding patient care and patients’ quality of life.
Active Citizenship Network is pleased to announce that a Memorandum of Understanding has recently been signed with the Dutch Orphans Feeding Foundation, a non-profit organization which supports orphans and vulnerable people globally. Orphans Feeding Foundation’s main objectives are the support of orphans and vulnerable children with regard to education, nutrition and health. Currently, Orphans Feeding Foundation focuses on supporting vulnerable populations suffering the war in Ukraine with continued healthcare, food and education. ACN and Orphans Feeding Foundation agreed to work together at the EU level in order to support each other’s initiatives and projects on the topic of the protection of patients’ rights and raise awareness on the needs surrounding patient care with relation to prevention.
As part of this long-standing partnership with Advances in Health and Behavior (AHB), Active Citizenship Network has recently published, last May 2022, the article "Isolated but not alone: the response to the pandemic in the story of PAGs from the Italian case history to the Global Health Summit “Rome Declaration”". In occasion of the Global Health Summit held in Rome last May 21, 2021, the article analyzed the condition of chronic and rare patients during the Covid-19 pandemic through the findings emerged from the XVIII National Report on Chronic Policies of Cittadinanzattiva, presented on October 13th, 2020, and entitled: "Isolated but not alone: the response to the pandemic in the story of Patients Advocacy Groups (PAGs)".
Active Citzenship Network has recently published, on 11 April 2022, a new manuscript dealing with the topic of therapeutic adherence entitled “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”on the International Journal of Epidemiology and Public Health Research, a peer-reviewed journal that encompasses all aspects of epidemiology and community health. The article examines the data emerged from the EU civic survey “The impact of the Covid-19 pandemic on non-communicable and chronic patients’ therapeutic adherence across Europe”, conducted by ACN in the second half of 2021, which show the inadequate attention of institutions and the main stakeholders in relation to access and continuity of care for non-Covid-19 patients.
Last 10 January 2022, Active Citizenship Network has published a new article entitled “The National Recovery & Resilience Plans According to Citizens’ Perspective: From the Italian Case History to the XVI European Patients’ Rights Day” on the international peer-reviewed journal Clinical Research and Clinical Trials, which publishes original research, reports, editorials, reviews and commentaries on all aspects of pharmaceutical, clinical trials, researches and related medical research methodologies. The newly published manuscript discussed about the significance of the engagement and empowerment of all European citizens, Patients' Advocacy Groups (PAGs), citizens organizations involved in healthcare issues and, more generally, to all actors that promote health as a common good, as a way to improve the health system. More in particular, the article focuses on the promotion of civic participation in the drafting and implementation process of National Recovery and Resilience Plans (NRRPs).
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