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Monthly Newsletter edited by Cittadinanzattiva-Active Citizenship Network
Civic Activism | Patients' Rights | Consumers' Rights | Support ACN
Year 6th, number 59 - June 2018

SPECIAL EDITION ON THE EUROPEAN CELEBRATION
OF THE XII EUROPEAN PATIENTS’RIGHTS DAY

Highlight

From therapeutic adherence to therapeutic alliance
Active Citizenship Network promotes this multi-stakeholder event since 2007, and as its Director, I am so honored to celebrate this relevant conference here at the EU Parliament. Today there are experts and leaders of civic and patient organizations, European networks, professionals and experts, public and private bodies and providers coming from at least 16 Countries. It is really a pleasure to host each one of you, especially for who have travelled a lot:, some of you arrive from no EU countries; this is very relevant for us since we always remind that patients’ rights have no borders. Read more

MarianoVotta
Director Active Citizenship Network

Focus

Therapeutic adherence: value the impact for patients and healthcare system

Active Citizenship Network celebrated the 12th European Patients’ Rights Day with a conference, held on the 23rd May 2018 in the European Parliament in Brussels. The event was an occasion to foster communication among different partners/actors in the healing and caring process to improve adherence to treatments and take commitments to increase the respect of patients’ rights and their involvement as fundamental active partners with health professionals in their own care, respecting the fundamental values recognised by the European Charter of Patients’ Rights.

Topics treated

- “Therapeutic adherence and its implications of patients and healthcare systems”
- “Empowering the Patient: dispelling the myths and identifying opportunities”
- “From the therapeutic adherence to the therapeutic alliance: a collaborative approach”

See the Conference Programme and all the PPT presentations
See the video message of the  European Commissioner  Vytenis Andriukaitis
The speakers’ biographies

The final remarks
Photos of the event
The press release in English - in Portuguese

Soon will be available a VIDEO on Therapeutic Adherence in different Eu laguages

PANELISTS' PROFILES

Vytenis Andriukaitis
2014 - present: Commissioner for Health and Food Safety.  2014: Vice-President of the World Health Assembly. 2012-14: Minister for Health in his Country. 2001-04: Deputy Speaker of the Lithuanian Parliament. 1999-2000: Party leader of Lietuvos Socialdemokratų Partija (LSDP, Social Democratic Party of Lithuania).

Brando Benifei
European Federalist, is one of the youngest MEPs and is from La Spezia, Italy. His main fields of legislative work in the EP are Employment and social affairs and Foreign affairs. He is co-chair of the Youth Intergroup and vice-chair of the Disability Intergroup.

Neil Betteridge
He now runs Neil Betteridge Associates (UK). He currently helps to coordinate much of the European work of GAfPA, the Global Alliance for Patient Access. He is International Liaison Officer, Public Affairs, for EULAR and in the UK he is Co-Chair of the Chronic Pain Policy Coalition.

MEP David Borrelli
He is member of the Non-attached Members Group in the European Parliament. He was born in 1971 in Treviso. Entrepreneur in the IT sector. Member of the European Parliament (2014- ). He is member of the Committee on Industry, Research and Energy (ITRE).

Jacqueline Bowman-Busato
She brings over 20 years’ experience in healthcare and life sciences policy-driven advocacy, stakeholder engagement and strategic alliance-building. She drives the policy impact pillar of the SCiE (Self-Care Initiative Europe). She has transformed a patient-led platform into an equally-weighted, multi-stakeholder think-tank.

Matteo Buccioli
Graduated in clinical engineering and in business administration and economics, since 2007 he works as Health Operation Manager. in 2008 he is a founding member of AMMP onlus of which he becomes President in 2016, from 2017 he is Vice President of the Italian Federation IPF and Rare Lung Diseases FIMARP onlus.

Umberto Comberiati
Chairman of the Value Added Medicines Group, Medicines for Europe, and Head of Marketing Europe at Teva Pharmaceuticals. Scientific background in pharmaceutical chemistry and translational medicine complemented with an MBA. Worked as a consultant for several global pharmaceutical corporations and expertise in commercial strategy and pricing & reimbursement.

Mep José Inácio Da Silva Ramos Antunes De Faria
 Lawyer until 2014. From 2007 to 2009 he was President of the National Jurisdiction Council of Partido da Terra – MPT (Earth Party). He was elected a Member of the European Parliament in 2014 in the Committee on the Environment, Public Health and Food Safety and of the Delegation for relations with the countries of Central America.

Antonio Gaudioso
He is currently General Secretary of Cittadinanzattiva, an Italian civic organization that promotes civic participation and protects citizens' rights. After his graduation in Political Science and International Relationship at the University of Macerata he got a Certificate in HTA from the London School of Economics.

Elena Gentile
She successfully graduated in Medicine at the University of Padova in 1978 and worked as paediatrician at the hospital of Cerignola from 1981 to 2005. In 2014, she was elected to the European Parliament joining the group of the Progressive Alliance of Socialists and Democrats (S&D).

Guendalina Graffigna
She received a PhD in Social Psychology at Catholic University of the Sacred Hearth of Milan (Italy) where she actually is Associate Professor. At the same University she teaches Qualitative Methodology and Psychology for Social Marketing, she coordinates the Executive Training Program in Marketing Intelligence.

Alessia Gramuglia
She is the EFN Policy Advisor. She has a background in European policies and public affairs, having worked in the European Parliament. Before joining the EFN, in September 2017, she has also worked for an EU Public Affairs Consultancy, where she was in charge of EU health-related issues.

Souzi Makri
She is involved with the Cyprus League Against Rheumatism as member of the board, and responsible for the office in Limassol. She is an expert patient on the expert patient list of EMA, and she is chairing two European organisations: ENFA and Agora.

Kiril Soleski
Kiril Soleski, MD,MSc,Sci is President of Association of doctors with interdisciplinary approach for children with disabilities (ADICD), Member of Macedonian Medical Association(MMA).  He has worked at Private General Practice for 13 years.

Tiziana Nicoletti
Member of Cittadinanzattiva since 1994. She is part of the National Coordination of Chronic Disease Associations - Cnamc - which is a network of Cittadinanzattiva, established in 1996, which represents an example of a cross-border alliance between Associations and Federations of people affected by chronic and rare diseases.

Svein Olaf Olsen
He has since several years been a board member of the European Huntington Association.  His wife is from an Huntington family and their life has been deeply influenced by the disease. Heis a business entrepreneur and CEO in Anzyz Technologies a company with a disruptive self-learning AI technology.

Andrew Powrie-Smith
Communications Director at EFPIA, the European Federation of Pharmaceutical Industries and Associations. He previously worked for the Association of the British Pharmaceutical Industry as a Director responsible for the creation and delivery of the association's reputational strategy.

Martin Seychell
Graduated in chemistry and pharmaceutical technology, he specialized in Chemical analysis. He has held important positions on several government boards and commissions in Malta (Food Safety Commission and the Pesticides Board). He occupied the post of Head of Directorate at the Malta Standards Authority (2001-2006).

Mariano Votta
Public affairs professional and journalist, is the Director of Active Citizenship Network (ACN), the international branch of the Italian NGO Cittadinanzattiva, where he is responsible for European Affairs. Since 2013, he has been actively involved as ACN stepped up its advocacy activities at the European Institutions.

Donna Walsh
She is the Executive Director of the European Federation of Neurological Associations (EFNA).  She began her career working in patient advocacy as Information and Communications Officer at the Migraine Association of Ireland.

Catherine Weil-Olivier
After a medical degree (1973) in Paris, she has always been a Pediatrician hospital based. Since more than two decades, she has been working in two main fields: the influenza field and the vaccinology field. Now she Joined the Coalition for life course immunization.

Jamie Wilkinson
Commenced his role as Pharmaceuticals and Professional Affairs Adviser of the PGEU in January 2014 before becoming Director of Professional Affairs in April 2015. The Pharmaceutical Group of the European Union (PGEU) is the European Association representing community pharmacists in 32 European countries. 

Further Comments

Here you can find two contribution from two stakeholders: the first is form the Prof. Daniele Levi & Prof Angelo Manenti who couldn’t come to the conference but sent to us their position on the topic. The second one is from Mike Devoy, Chief Medical Officer at Bayer.

1)Therapeutic Adherence and crisis of credibility
New ethics, communication skills and ways to update physicians are needed. Prof. Daniele Levi & Prof Angelo Manenti analyze the phenomena with the approach that the non-adherence to prescriptions can be a major problem linked to a crisis of credibility of sciences. Read more

2) Drugs don't work in patients who don't take them
Timely and continuous use of prescription medicines as recommended by a physician is key to effective disease management. Yet, medicines are frequently not used as directed, leading to poor medical outcomes, avoidable health care costs, and lost productivity. Closing the adherence gap can improve the quality of healthcare and promote better patient outcomes. Here Mike Devoy, Chief Medical Officer at Bayer talking about the critical link between medication adherence and patient safety.

International & National initiatives for the European Patientsí Rights Day 2018

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!
Please, if also you would like to add your event for the celebration of the European Patients’ Rights Day in your Country, write to Daniela Quaggia d.quaggia@activecitizenship.net

At European Level  
European Committee for Standardization (CEN) Read more
European Federation of Nurses Associations  Read more

 

At National level

Italy
Cittadinanzattiva in more of 40 cities  Read more

Belgium
La LUSS, la Ligue des usagers des services de santé Read more
Vlaamspatienten platform Read more
H. Hartziekenhuis Mol  Read more
Lokeren Market Read more
Christelijke Mutualiteit Read more

Bosnia
Kap Read more

Bulgaria
Ombudsman Read more
Lex Medica Read more
Health Forum Read more
MOreto.net  Read more
RHIF Read more
Center for Reproductive Health "Dr. Vasil Daskalov" – Plovdiv Read more

Croatia
Prava pacijenata - ogranak Zadar Read more
Ljekarna Pharmacy Read more
Hrvatski Radio Read more
Ombudsman Read more
Coalition of Health Associations & Europa Donna Croazia Read more and Read more

Cyprus
Pancyfian Federation of Patient and Friends Associations (PPSFF) Read more
Health Minister Read more

Finland
Diabetesliitto Read more
Helsinki e Uusimaa Hospital District (HUS) Read more
District Hilkka Manner Read more
Soite Read more

France
France Assos Santé Read more
ASL Liga – Ligue SLA Read more
Clinique Charcot Read more
Conférence Régionale de la Santé et de l'Autonomie des Hauts de France Read more
La Maison des Usagers du CHPA-CHIAP Read more
Agences régionales de santé du Nord-Pas-de-Calais et de la Picardie Read more
Hôpitaux du Pays du Mont-Blanc Read more
Hospices Civils de Lyon Read more
Groupe Hospitalier Mutualiste Les Portes Du Sud Read more
Centre Hospitalier Victor Jousselin de Dreux Read more
Clinique Saint Antoine Read more
Concours national « Droits des usagers de la santé » Read more

Greece
General Hospital "George Papanikolaou Read more
General Hospital Papageorgiou Read more

Lithuania
State Center for Mental Health Read more

Malta
Malta Medicines Authority Read more
Malta Health Network & No Pain Foundation Read More

Poland
Ombudsman  Read more

Portugal
Serviço Nacional de Saúde Read more
National School of Public Health della New University of Lisbon (ENSP-NOVA) Read more
Ordem Sao Francisco do Porto Read more
Alzheimer Portugal Read more

Slovacchia
Hon  Medik  Read more

Spain
Plataforma de Pacientes Read more
Pediatria social Read more
AENOR Read more
Clinicas Vitaudio  Read more
Organizazion medica collegial de Espana Read more
Escuela de Salud y Cuidados de Castilla-La Mancha Read more
Sindicato de Enfermería (Satse) Read more
Asociación Pheipas Read more
INCIBE Read more
Hospitales San Roque Read more
Asociación Española de Portadores de Válvulas Cardíacas y Anticoagulados Read more
Federación Española de Cáncer de Mama (FECMA) Read more
EAM Hospital Read more
Federación Española de Diabetes (FEDE) Read more
Hospital Guadarrama Read more
Terapia Psicológica Read more

 

And much more….

Press review

Some of the clippings and articles about the conference:
Observatory of Adherence to Treatment from Spain Read more (ES)
Italia Oggi Read more
IAPO Read more
EHMA Read more
Juponline  Read more
Atlas dasaude Read more

Events

10 July 2018, Bruxelles, Belgium:  “Pharmaceutical compounding: finding the balance between addressing the unique needs of patients and ensuring the highest standards of care
The European Confederation of Pharmaceutical Entrepreneurs (EUCOPE) organizes this event with the objective to exchange information with European stakeholders – from pharmacist, to medical and patient organisations, as well as pharmaceutical companies – on the safety and efficacy of compounded products as well as the framework regulating its use. To better understand this context, EUCOPE has also commissioned Springer Medical to carry out a research in this area and will use this occasion to present some preliminary findings. Tuesday 10 July, from 10:00 to 12:00 at FTI Consulting’s office (23 Avenue Marnix, 1000 Brussels, Belgium). To know more please write to Zachary Burnside zachary.burnside@fticonsulting.com

6 November 2018, Bruxelles, Belgium:  European training seminar on vaccination.
 Active Citizenship Network (CAN) will organize an European training seminar on the theme of life-course vaccination opened to at least selected 20 leader of civic and patients associations coming from different countries. The reason is to responds to the need to be more up-to-date and prepared in the face of a phenomenon (the decrease in vaccination coverage) that has returned to topical relevance; to better identify, recognize and struggle the increased external factors that can negatively influence the vaccine policy in EU Member States and have updated information & knowing how to recognize official sources of information.
To have more information write to Daniela Quaggia d.quaggia@activecitizenship.net

7 November 2018, Bruxelles, Belgium:  Event at EU Parliament “European active citizens for vaccines promotion”.
After the successful event “The challenges of life-course vaccination to enhance public health protection in Europe: a multi-stakeholder approach, ACN, just some months before the election of the new EU Parliament, will organize an event to reflect, in a multi-stakeholder environment, on the commitment of EU Institutions to the topic and to produce a proposal of positioning, of the civic associations involved about the Eu work to strengthen the cooperation among all relevant actors.  To contribute for a more integrated policies cooperation to the theme, avoiding any silos approach. To have more information write to Daniela Quaggia d.quaggia@activecitizenship.net

 

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

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