If you are having trouble viewing this email, click here to view it in a standard browser
Monthly Newsletter edited by Cittadinanzattiva-Active Citizenship Network
Civic Activism | Patients' Rights | Consumers' Rights | Support ACN
Year 7th, number 69 - May 2019

SPECIAL EDITION ON THE EUROPEAN CELEBRATION OF THE 13th EUROPEAN PATIENTS’ RIGHTS DAY

FOCUS ON DIGITAL HEALTH AND PERSONALIZED MEDICINE
Highlight

Digital Health & Personalized Medicine
“Digitalizing health systems is a key component in achieving universal health coverage, which is based on the belief that all people should have access to the health services they need – including disease prevention, health promotion, rehabilitation and palliative care – without the risk of financial ruin or impoverishment. In this context, digital health has an important role to play in improving the reach, impact and efficiency of modern health care and in delivering patient- centered services,” said Zsuzsanna Jakab, Director of the World Health Organization’s Regional Office for Europe, in her opening keynote speech in the framework of Health Systems in the European Region (Copenhagen, 6-8 February 2019), organized by the WHO Regional Office for Europe and the Norwegian Centre for E-health Research.
Focus

Delivering patient value throughout the healthcare system. Focus on Digital Health and Personalized Medicine. - PUBLIC EVENT


Prof. Walter Ricciardi, MEP David Borrelli, Neil Betteridge, Mariano Votta, Martin Seychell

To continue the celebrations of the XIII European Patients' Rights Day, on the 10th of April has been held an event dedicated to Digital Health and Personalized Medicine. The aim  was to go into a topic related to several Patients’ Rights listed in the in the EU Charter of Patients’ Rights: the right to preventive measures (1st), the right to the observance of quality standards (8th), the right to safety (9th), the right to innovation (10th). The event was kindly hosted by MEP David Borrelli, Non-attached Members. Read more

Click here to read the Conference’s programme 
Click here to read the speakers’ biographies 
Click here to see the photos of the event 
Click here to see the webcast replay of the conference 
Click here to read the press release

Speakers’ list

Neil Betteridge
He now runs Neil Betteridge Associates (UK), a company offering patient insight at a strategic level to UK and international projects involving patient associations, health professional organisations and private companies.

MEP David Borrelli
He is member of the non-attached Members Group in the European Parliament. He is member of the Committee on Industry, Research and Energy (ITRE), Committee on International Trade (INTA), Delegations for the relations with the Mashreq Countries, South Africa and Delegation of the Parliamentary Assembly of the Union for the Mediterranean.

Paul De Raeve
On Work experience, He was appointed as staff manager at the Free University hospital of Brussels, part-time delegated to the Belgium Ministry of Health and Environment. In 2002, he was appointed as General Secretary of the European Federation of Nurses Associations (EFN) and in 2015 EFN members asked him to establish and develop the European Nursing Research Foundation (ENRF).

Nicole Denjoy
COCIR Secretary General since 2005 she is based in Brussels. Nicole has gathered more than 35 years of experience in the medical technology industry, working for companies including L’air Liquide, Ohmeda, Boston Scientific and Baxter.

Antonio Gaudioso
He is currently General Secretary of Cittadinanzattiva, an Italian civic organization that promotes civic participation and protects citizens' rights. He worked on the adoption of the first Law on Pain and contributed to several information campaigns related to rights’ protection, with a special focus on health rights.

Denis Horgan
Since 2012, he is the Executive Director of the European Alliance for Personalised Medicine (EAPM). In recent years, through his efforts, this has created an observable institutional shift in policy due to the issues that the Alliance has put forward through its multi-stakeholder membership and bottom-up policy making.

Usman Khan
He was appointed Executive Director of the European Patients Forum in April 2019. Prior to taking up his post at EPF, Dr Khan was Executive Director at the European Health Management Association.  A health policy and management professional with in excess of 25 years’ executive level experience within the public, private and not for profit sectors.

Giancarlo Pruneri
MD degree, University of Milan, Specialization in Pathology. 2017: Director Division of Pathology Istituto Nazionale dei Tumori, Milan; 2015-2017: Director, Unit of Biobank for Translational Medicine (B4MED); 2018: Full Professor in Pathology.

Walter Ricciardi
Professor of Hygiene and Public Health at the Università Cattolica del Sacro Cuore, Rome andPresident of the World Federation of Public Health Associations (WFPHA). In November 2017 he was appointed Italian Representative in the Executive Board of WHO. From August 2015 to December 2018 he was the President of the Italian National Institute of Health. In May 2013 he was appointed Member of the Expert Panel on effective ways of investing in Health (European Commission, DG – SANTE) and in December 2016 he has been awarded a three-year second mandate.

Martin Seychell
He occupied the post of Head of Directorate at the Malta Standards Authority (2001-2006). He has been responsible for the implementation of a number of EU directives in the areas of risk assessment, food safety, chemicals and cosmetic products legislation. He held the post of Director of Environment in Malta (2006-2011). He was appointed Deputy Director General for Health and Consumers at the European Commission in March 2011.

Mariano Votta
Director of Active Citizenship Network and Responsible for European Affairs at Cittadinanzattiva. He has more than 18 years of experience in the field of the protection of citizens’ rights, stakeholder engagement, communication and civic information. In 2015 he took the initiative to launch the MEP Interest Group “European Patients' Rights & Cross-Border Healthcare”, promoted with the endorsement of almost 100 organizations across Europe.

EUROPEAN PATIENTS’ RIGHTS DAY 2019: INITIATIVES ACROSS EUROPE
Look at some examples of hundred initiatives all around Europe. The European Patients’ Rights Day has become a fixed appointment in to improve patients’ rights in Europe and in each Member State!
If you wish to add also your event dedicated to the celebration of the European Patients’ Rights Day in your country, please write to Daniela Quaggia d.quaggia@activecitizenship.net.

Albanian Patients’ Rights Day 2019
Last 18 April, in occasion of the European Patients' Rights Day,  Mrs. Arlinda Shehu, Program Manager at Association "Together for Life", historic partner of Active Citizens Network, talked for TV SCAN about the respect of the patients' rights in Albania and the work done by "Together for Life" for the protection of such rights. Listen the interview in national language.


Arlinda Shehu, Program Manager at Association "Together for Life"

Albania: Respect for patient's rights, respect for life
The Albanian Charter of Patient’s Rights was approved by Order of the Minister of Health in December 2010. In the framework of the European Day of Patients 'Rights, "Together for Life", historic partner of Active Citizens Network, presented the Study on Patient Challenges with Hemophilia, and supported a media campaign to raise the voice of respecting patients' rights. To know more, click here (video in national language).

Bulgarian Patients’ Rights Day 2019
Bulgarian Association for Patients' Defense, partner of Active Citizenship Network, published in national languages communication material regarding the European Charter of Patients' Rights. To download the documents click here.

Cyprus Patients’ Rights Day 2019
The Minister of Health, on behalf of the President of the Republic, addressed the event organized by the Cyprus Federation of Patients’ and Friends’ Associations, on the occasion of the European Patients’ Rights Day, at the Presidential Palace. To know more, click here.

Irish Patients’ Rights Day 2019
In occasion of the Irish Patients’ Rights Day organized in Dublin last May 14th by the Irish Patient Organization, Antonio Gaudioso, Secretary General of Cittadinanzattiva, received a special award for his substantial work and commitment for Patients’ Rights.  Read the programme of the initiative and listen a radio-interview of Gaudioso.


Antonio Gaudioso together with Stephen A. McMahon, Co-founder and Director of the Irish Patients Association

Italian Patients’ Rights Day 2019
Over 50 initiatives throughout Italy promoted by Cittadinanzattiva-Tribunal for Patients' Rights on the subject of waiting lists. To know more, click here (IT language).
Events

14th June, Rome (Italy): STAR-ProBio/LIFECAB Joint Annual Workshop at the EURAS 2019 Conference
STAR-ProBio supports the European Commission in the implementation of European policy initiatives, including the Lead Market Initiative in bio-based products, the industrial policy and the European Bio-economy Strategy. The overall goal of the project is to formulate guidelines for a common framework promoting the development of regulations and standards that support the adoption of business innovation models and market uptake in the bio-based products sector. Cittadinanzattiva is invited to join the meeting as it is recognized as stakeholder of the initiative. Read more

18th June, Brussels (Belgium): Protecting consumers taking credit in the digital era: Can we do better?
The aim of the conference, jointly organised with CEPS-ECRI, is to exchange views on the functioning of the existing rules for consumer credit and discussing possible improvements. Among others, the conference will cover the role of consumer credit in the economy, the scope of application of existing rules, the effectiveness of information disclosure and the model of responsible lending in the digital era. To know more, please contact the European Credit Research Institute (ECRI).

19th June, Brussels (Belgium): Jury panel meeting
In the framework of the 2nd edition of the project “EU Civic Prize on Chronic Pain - Collection of good practices”, Active Citizenship Network will put together the Members of the Jury in order to identify the winners, for the following categories: patients’ empowerment, innovation, clinical practices; professional education. The award ceremony will be held in Brussels on November the 6th, the evening before the SIP 2019 symposium. To know more about the Prize, click here.

19th June, Brussels (Belgium): Pain Alliance Europe General Assembly 2019
As Board Member of Pain Alliance Europe, Cittadinanzattiva-Active Citizenship Network will participate to the Annual PAE General Assembly. To know more, please contact PAE secretariat.

26 & 27 June, Brussels (Belgium): ECCG meeting
The European Consumer Consultative Group is the Commission's main forum to consult with national and European consumer organisations. The Italian consumer organizations are represented by Cittadinanzattiva, and the next meeting is planned at the end of June. To know more about ECCG, click here.

2nd July, Brussels (Belgium): Steering Committee meeting of the new EU vaccine project
In line with its engagement on vaccines, Active Citizenship Network has launched during the European immunization week a new initiative on the topic at the European level called “European active citizens for vaccines promotion”. The first meeting of the Steering Committee of the project will be held in Brussels at the beginning of July. To know more about this new initiative, click here.

-------------------------------------------------------------------------------

The Conference “Delivering patient value throughout the healthcare system. Focus on Digital Health and Personalized Medicine” has been realized thanks to the support of:
 


Director and Editor in chief: Mariano Votta
Editors: Bianca Ferraiolo, Daniela Quaggia
Coordination and Production: Giacomo D'Orazio 

To contribute, plase write to: mail@activecitizenship.net
WWW.ACTIVECITIZENSHIP.NET WWW.CITTADINANZATTIVA.IT

Active Citizenship Network c.o. Cittadinanzattiva - Via Cereate 6 - 00183 Roma - Tel. +39 6 367181 - Fax +39 6 36718333
Representative office to the UE: Rue Philippe Le Bon, 46 - 1000 Brussels (Belgium)
Tel: (+39) 340 84 65 097 Mail: brussels@activecitizenship.net