epf e-newsletter: a new look to better serve our … · pharmaceutical conference 2012 in la hulpe,...
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EPF newsletter
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EPF E-NEWSLETTER: A NEW LOOK TO BETTER SERVE OUR MEMBERS AND ALLIES
You will certainly notice a brand-new "look and feel" of the EPF mailing that arrivesin your in-boxes today. We see this new “EPF monthly e-newsletter” as a vehicle toshare our news and stories more regularly and more succinctly on key developmentslinked to our policy priorities and our project portfolio. All of this, at a glance. Wemade a deliberate choice to focus this newsletter only on the latest news in order tohelp you to scan it quickly. More in-depth analysis will be available on our websitethanks to the option “Read more” and to the numerous available links.
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FOLLOW US AND MAKE THEPATIENTS' VOICE LOUD!
SUSTAINS PROJECT SHIFTS INTOHIGH GEAR
EPF launches into the social mediasphere! We want to make sure youhave the opportunity to connect withand contribute to our work, tounderstand the dynamics of our policyand project work to patient-centredhealthcare and, most importantly, topromote unity across the EU patients'movement.
The SUSTAINS project, which hasofficially started this year, held itssecond consortium meeting on 7 Mayin Copenhagen. The main objectivewas to get an update of the state ofplay of SUSTAINS' servicesimplementation in the 11 participatingcountries/regions and to takedecisions on important horizontalissues that are relevant to the workEPF is leading as a member of theSUSTAINS consortium.
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USER ACCEPTANCE OF EHEALTH:HYPE, HOPE OR REALITY?
EPF BRINGS A EUROPEANPERSPECTIVE TO BELGIANHEALTHCARE
UPCOMING EVENTS
23/05/2012 | "The Future of HealthResearch and Innovation in Europe: Theneed for Strategic Action"
European Commission, Brussels,Belgium Patients' perspective on future of healthresearch
EPF attendance :Nicola Bedligton, speaker
24-25/05/2012 | InterQuality Meeting
Catania, ItalyPresentation of the EPF work done indissemination since January andestablishment of some collaborative workwith partners.
EPF attendance :Giulia Evolvi
24-25/05/2012 | Kick-Off meeting of theJoint Action on Patient Safety and Quality ofCare
Copenhagen, DenmarkEPF is an associate partner in this projectwhich overall aim is to create a permanentplatform for future cooperation betweenMembers States in the area of PatientSafety and Quality of Care.
EPF attendance :Nicola Bedlington Kaisa Immonen-Charalambous
29/05/2012 | Access to MedicinesPlatform on Transparency andIndependence
EPF newsletter
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The eHealth week - from 7-9 May inCopenhagen, Denmark - closed itsdoors last week after three days ofdiscussion on how to tackle the futurehealthcare challenges Europe is facing.The focus of this year's conferencewas how to create an optimal patientjourney through our healthcaresystem. Anders Olauson, EPF President, tookpart as a panelist in the sessionentitled "eHealth for the chronically illpatient – hype, hope or reality?"Discussions have touched upon someof the remaining barriers that are stillhampering the large deployment ofeHealth services in Europe.
Nicola Bedlington, EPF ExecutiveDirector, introduced a Europeanperspective on 17 April at the BelgianPharmaceutical Conference 2012 in LaHulpe, Belgium. During herpresentation, she valued meaningfulpatient involvement and empowermentin healthcare through two mainprojects of EPF: Value + and EUPATI.Organised by both the BelgianAssociation of PharmaceuticalPhysicians and Pharma.be, thisconference aimed at translating astrong resolve to build the future ofthe Belgian healthcare system. Thefocus was "the impatient patient".Impatience is inherent to patients,mostly because of their medical needs.They are at the centre of healthcarebut their possible contribution is nottaken enough into account inhealthcare policy.
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EPF: "NO REFORM OF HEALTHSYSTEMS WITHOUT PATIENTS"
EPF STRESSES THE IMPORTANCEOF PATIENT INVOLVEMENT INHEALTHCARE INNOVATION
Nicola Bedlington, EPF ExecutiveDirector, and Robert Johnstone, EPFBoard Member, took part in the 1stEuropean Conference on PatientEmpowerment, Copenhagen, 11-12April 2012. The conference wasorganized under the auspices of theDanish Committee for HealthEducation, Careum, WHO/Europe andENOPE – the European Network forPatient Empowerment. The purposewas to explore the contribution andthe empowerment of patients andcitizens to the future of health andsocial care in Europe.
Anders Olauson, EPF President, andNicola Bedlington, EPF ExecutiveDirector, participated in the conference"Innovation in Healthcare withoutborders", on 16-17 April, in Brussels,Belgium. The main objective of theconference was to act as aninnovation in healthcare policy foruminvolving the key actors and policy-makers. Mr Olauson highlighted hisconviction that "Patients can play akey role in providing some answers tothe question how to foster innovationand its adoption in healthcare in anequitable and sustainable way."
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European Commission,Brussels, BelgiumDrafting group for Charter on Transparency
EPF attendance :Nicola Bedligton, speaker
29-31/05/2012 | 3rd EU Societal Impactof Pain symposium
Copenhagen, DenmarkAlready 150 international organisations haveconfirmed their support towards thescientific aims of the "Societal Impact ofPain" (SIP). SIP is an international, multi-stakeholder platform created in 2010 whichaim is to raise awareness of the impact thatpain has on our societies, health andeconomic systems, exchanging informationand sharing best-practices across allmember states of the European Union.
30/05/2012 | IMI Stakeholder Forum
Brussels, Belgium Introduction of the EUPATI project
EPF attendance :Nicola Bedligton, speaker
31/05/2012 - 01/06/2012 | NordicConference on cross cooperation on rarediseases
Reykjavik , Iceland Focus on co-operation to improveknowledge within the Nordic countriesregarding Rare Diseases.
EPF attendance :Anders Olauson - speaker
11-13/06/2012 | Hospage Conference
Berlin, GermanyAgeing Health Workforce - Ageing patients:Multiple challenges for hospitals in Europe
EPF attendance :Anders Olauson - speaker
14-15/06/2012 | Gender and Healththrough Life
Copenhagen, DenmarkA conference to mark the DanishPresidency's EU agenda of gender, equalityand healthy ageing.Susanna Palkonen – speaker
EPF attendance :Nicola Bedlignton – Co-chair
EPF newsletter
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EUROPEAN PATIENTS’ FORUMRue du commerce 311000 BrusselsBELGIUM
Phone : + 32 2 280 23 34Email : [email protected]
EIP-AHA: FROM PLAN TO ACTION
On 3 April, DG SANCO held theconference of the European InnovationPartnership on Active and HealthyAgeing (EIP-AHA): "From Plan toAction" in Brussels. The title speaksfor itself: the objective was to presentthe Strategic Implementation Plan ofthis pilot European InnovationPartnership, to provide information onthe next steps and allow stakeholderswilling to put the plan into actionthrough working together in closecollaboration.
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This e-newsletter arises from the EPF 2012 Work Programme, which has received funding from the European Union,in the framework of the Health Programme. Disclaimer: The content of this e-newsletter reflects only the author’s views and the Executive Agency is notresponsible for any use that may be made of the information contained therein.
If you no longer wish to receive emails from EPF, simply send an email to [email protected] to unsubscribe.
EPF newsletter
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A WORD FROM EPF PRESIDENT AND EPF DIRECTOR
Welcome to 2nd issue of the EPF newsletter – and thank you very much to all ofyou who sent positive and constructive comments on our new-look communications!
In this pre- summer issue we are happy to share with you some updates on currentprojects and policy priorities. We are delighted to report that our Youth Project‘EMPATHY ‘has been awarded EU funding. Our policy advisory group held a veryexciting meeting in early June. We have also had the opportunity to participate inseveral conferences and events to present the patients standpoint on issues such asthe future of the Innovative Medicines Initiative, Health Research and the directionof HORIZON 2020- the next framework programme on Research and Innovation. We hope you find this issue informative and useful – do not hesitate to contact theEPF team if you need more info. Warmest Greetings and our best wishes for a lovely summer
Anders Olauson, EPF President and Nicola Bedlington, EPF Executive Director
SUCCESSFUL PROJECTAPPLICATION: EMPATHY
KICK-OFF OF THE JOINT ACTIONON PATIENT SAFETY AND QUALITYOF CARE
“EMPATHY: Europe meets YoungPatients”: this is the name of the newproject that EPF will be running asfrom August. The applicationsubmitted in February 2012 under theYouth in Action Programme 2012 Callhas been successful.
The “Patient Safety and Quality ofCare” or “PaSQ” Joint Action (JA) hasofficially started with the kick-offconference in Denmark, 24-25 May.This three-year Joint Action is led bythe French Haute Autorité de Santé(HAS) and EPF will be activelyinvolved in several key work packages.
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EPF ADVOCATES A PATIENTPERSPECTIVE ON THE “HEALTHFOR GROWTH” PROPOSAL
EPF RESPONSE TO CHRONICDISEASES CONSULTATIONSTRESSES PATIENTS’ CENTRALROLE
UPCOMING EVENTS
19 & 20/06/2012 | Artic Light eHealthConference
Lulea, Sweden Leading politicians, business leaders,operators and public sector officials from allover Europe will convene to discuss thehealthcare of the future
EPF Attendance:Walter Atzori - Speaker
21/06/2012 | SANOFI Patient meeting onclinical trials
Paris, France The meeting will focus on the Clinical TrialsDirective
EPF Attendance:Kaisa Immonen-Charalambous - Speaker
21/06/2012 | Revision of the EUTransparency Directive
Brussels, Belgium Breakfast meetingMarket Access for Innovatives Medicines
EPF attendance:Nicola Bedlington
27/06/2012 | Pharmaceuticals pricing
Brussels, Belgium
EPF newsletter
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The European Commission’s proposalfor a health programme 2014-2020,titled “Health for Growth”, waspublished on 9 November 2011. EPFwas vocal in giving feedback in therun-up to the publication of thisproposal, both independently andjointly with the European Public HealthAssociation (EPHA). The proposal iscurrently awaiting its first reading inthe Parliament, with FrançoiseGrossetête MEP (EPP, France) as therapporteur.
The Commission launched a reflectionprocess on chronic diseases in earlyNovember 2011. It followed a requestby the Council in its Conclusions on“Innovative approaches for chronicdiseases in public health andhealthcare systems”, adopted on 7December 2010. The reflection processaims to produce an EU strategy onchronic diseases, focusing on thesustainability of health systems. Theprocess is likely to conclude during thefirst part of 2013.
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INTERQUALITY: SMARTERFINANCING, IMPROVED QUALITYFOR PATIENTS
RENEWING HEALTH: EPF TOEXPLORE THE PERSPECTIVE OFTELEMEDECINE END USERS
How to spend money efficiently inhealthcare? The InterQuality projectpartners held a meeting on 24-25 Mayin Italy to pave the way of theanswer. Started in December 2010and led by the Medical University ofWarsaw, the project intends todevelop scientifically validated tools tohelp decision-makers choose the rightfinancing mechanisms in differentareas of healthcare systems. Themeeting was the occasion to evaluatethe results until now and to focus ontheoretical deliverables.
As co-manager of the Renewing HealthUser Advisory Board EPF was co-organiser of the second meeting withusers of the telemedicine servicespiloted in the context of theRENEWING HeALTH project. Thepurpose of RENEWING HeALTH is toimplement multi-site randomisedcontrolled trials for evaluatingtelemedicine services for patientssuffering from three of the mostcommon chronic conditions: diabetes,cardiovascular diseases and ChronicObstructive Pulmonary Disease(COPD). The ultimate goal is todemonstrate that telemedicine-basedservices can improve quality of life,enable patient empowerment whileoptimising the use of resources inhealthcare provision.
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THREE WORKING GROUPS TOEMPOWER EPF POLICY ADVISORY EUPATI: AN IMI RECENTLY-
LAUNCHED PATIENT ACADEMY
Lunch debate at Europan Parliament onpharmaceuticals pricing
EPF attendance:Kaisa Immonen-Charalambous
28/06/2012 | TOPRA meeting onpharmacovigilance
Brussels, Belgium TOPRA is the global organisation forRegulatory Affairs professionals and forthose who have an interest in RegulatoryAffairs in the healthcare sector. Thismeeting will focus on the EUPharmacovigilance legislation
EPF attendance: Kaisa Immonen-Charalambous - Speaker
28 & 29/06/2012 | High-level Science forPolicy Consultation Event
Brussels, Belgium EPF President will lead the discussion about"What needs to improve from theperspective of third-parties and interestgroups?"
EPF attendance:Anders Olauson - discussion lead role
03/07/2012 | Platform on ethics &transparency
Brussels, Belgium Drafting Group meeting about the Platformon Ethics & transparency
EPF attendance:Kaisa Immonen-Charalambous
05/07/2012 | EFPIA Think Tank
Brussels, Belgium Patients’ organisations and thepharmaceutical industry as consumers andproducers of pharmaceutical products set upa joint Think-Tank in order to have adialogue on EU policy issues in the area ofhealth and innovative medical research.
EPF attendance:Kaisa Immonen-Charalambous, NicolaBedlington
25 & 26/10/2012 | 2012 EPF RegionalAdvocacy Seminar
Lisbon, Portugal Save the date for the 5th EPF RegionalAdvocacy Seminar ! This year’s theme:“Fundraising: Resourcing PatientOrganisations for a Strong PatientMovement
EPF newsletter
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GROUP
The Policy Advisory Group (PAG) meton 4 June 2012 in EPF offices. Set upin 2009, the Group has become aninvaluable advisory body for the EPFBoard and Secretariat. Among othertopics of interest, the Group in its pre-summer meeting confirmed the launchof three pilot working groups onspecific themes, to which all interestedEPF members can contribute.
EPF Executive Director, NicolaBedlington, introduced the projectEUPATI - European Patients' Academyon Therapeutic Innovation - at the IMIStakeholder Forum on 30 May. It wasan example of a recently-launchedproject funded by the InnovativeMedicines Initiative (IMI).
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A EUROPEAN COUNCIL FORHEALTH RESEARCH INCLUDING APATIENT PERSPECTIVE?
NOW IT IS THE TIME FOR ACTIVECITIZENSHIP!
EPF Executive Director, NicolaBedlington, gave a presentation on theimportance of patient involvement atthe Conference “Future of HealthResearch and Health Innovation – theneed for strategic action” on 23 May.The meeting set out to examine theneed for a pan European strategicplatform for health research in theframework for the next EU researchprogramme HORIZON 2020.
Active Citizenship Network celebratedthe 6th European Patients' Rights Dayin Brussels, with a conference entitled"Active Ageing citizens at the centre ofEU health policy", on 15-16 May 2012.The conference was fully focused onthe European topic of the year “ActiveAgeing and Solidarity betweenGenerations”. EPF board memberPhilip Chircop and Nicola Bedlingtonrepresented EPF at this event.
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PLATFORM ON TRANSPARENCYAND ETHICS: THE GUIDINGPRINCIPLES ARE ON-GOING
EPF newsletter
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EUROPEAN PATIENTS’ FORUMRue du commerce 311000 BrusselsBELGIUM
Phone : + 32 2 280 23 34Email : [email protected]
EPF Executive Director, NicolaBedlington, attended the Platform onTransparency and Ethics on 4 June2012. The aim of the meeting was toagree a terms of reference for the EUPlatform on Transparency and Ethics.The participants also reviewed a draftdocument on Guiding principles onTransparency and Ethics in thePharmaceutical Sector.
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This e-newsletter arises from the EPF 2012 Work Programme, which has received funding from the European Union,in the framework of the Health Programme. Disclaimer: The content of this e-newsletter reflects only the author’s views and the Executive Agency is notresponsible for any use that may be made of the information contained therein.
If you no longer wish to receive emails from EPF, simply send an email to [email protected] to unsubscribe.
EPF newsletter
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A WORD FROM EPF PRESIDENT AND EPF DIRECTOR
Welcome to the July issue of the EPF Newsletter with much information onforthcoming events in autumn, including our EPF Regional Advocacy Seminar andnews on progress regarding our capacity building programme. Our next issue willinclude an update on our youth group, our plans for the European Health PolicyForum Gastein, and our strategic planning working group.It promises to be very a very productive autumn. Policy news includes an update onthe Transparency Directive, Data Protection and Professional Qualifications Directive.We report on EPF’s contribution to the first patients’ Conference on Nutrition, andour recent joint work with the European Men’s Health Forum on Gender and HealthThrough Life. We hope you enjoy this issue, that you have a happy and relaxingsummer, and we look forward to seeing many of you after the break. Warmest Greetings
Anders Olauson, EPF President and Nicola Bedlington, EPF Executive Director
FIFTH EPF REGIONAL ADVOCACYSEMINAR
EPF TO EMPOWER ITS MEMBERS’CAPACITY AND ADVOCACY SKILLS
The Fifth EPF Regional AdvocacySeminar will take place in Lisbon,Portugal on 25-26 October 2012. Theseminar is organised in collaborationwith Associação Protectora dosDiabéticos de Portugal (DiabetesAssociation of Portugal).
The European Patients’ Forum (EPF)Capacity Building Programme (2012-2014) for patient organisations islaunched! 30 patient organisationsfrom Bulgaria, Hungary, and Romaniaand eight pan-European disease-specific patient organisations will starttake part in the pilot part of theprogramme in the second part of2012.
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EPF TO CONTRIBUTE TO THEREVISION OF THE EUTRANSPARENCY DIRECTIVE
EPF ADVOCATES A PATIENTPERSPECTIVE ON DATAPROTECTION
UPCOMING EVENTS
21 & 22/08/2012 | EUPATI executivecommittee meeting
Berlin, Germany EPF is the project coordinator of EUPATIproject and will chair the meeting, and inparticular will lead Work Package 6 aboutDeployment and Quality Assurance. Theobjective of this WP6 is to implement theEUPATI expert, education and informationprogrammes at European and nationallevels with three patient audiences, and tomonitor and evaluate on an on-going basisthe quality and impact of the programmes‘delivery
EPF Attendance:Nicola Bedlington, chairing Liuska Sanna, leading WP6
25 & 26/10/2012 | 2012 EPF RegionalAdvocacy Seminar
Lisbon, Portugal Save the date for the 5th EPF RegionalAdvocacy Seminar ! This year’s theme:“Fundraising: Resourcing PatientOrganisations for a Strong PatientMovement”
EPF newsletter
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The European Commission recentlypublished a proposal to revise the so-called “Transparency Directive”(Council Directive 89/105/EEC). It setsrules for the administrative proceduresrelating to pricing and reimbursementdecisions at national level. While EUlegislation provides a harmonisedframework for the authorisation ofmedicinal products, Member Statesremain responsible for setting nationalpricing policies and conditions forreimbursement, in the context ofnational health insurance systems.
Protection of personal data matters topatients. Patients’ health and geneticdata are sensitive information whichrequires a high level of protection toensure they are not unnecessarilydisclosed. At the same time, thesmooth sharing of these data isabsolutely crucial for the goodfunctioning of healthcare services,patient safety, and to advancingresearch. For this reason, EPF ispreparing a position paper with itsmembership to advocate a patients’perspective on the proposal for aregulation on personal data protection.
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EPF TAKES A STAND ON THEPROFESSIONAL QUALIFICATIONSDIRECTIVE
FIRST CONFERENCE ON THEPATIENTS’ PERSPECTIVE ONNUTRITION
Professional Qualifications have adirect impact on patient safety and areof great concern for the patientcommunity. Ensuring that healthcareprofessionals have the right training,and are fit to practice when theymove from one EU Member State toanother is of crucial importance forsafety and quality of care. This is thereason why EPF released in June itsposition statement on the EuropeanCommission’s proposal to review theDirective 2005/36/EC.
Patients have particular – and diverse- needs as regard nutrition, which arecurrently unmet across the EU. Theconference ‘EU Patient groups & therelevance of nutrition’ held on 4 July inBrussels successfully brought togetherpatients groups from various diseaseareas, and various stakeholdersworking on health and nutrition. Theyidentified common priorities andrecommendations, and discussed theway forward to continue workingtogether.
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HEALTH AND THE LIFECONTINUUM FROM A GENDERPERSPECTIVE
EPF TO SET THE SCENE FORDISCUSSION ON PATIENTINVOLVEMENT IN HTA
EPF newsletter
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EPF was proud to partner with theEuropean Men’s Health Forum (EMHF),the European Cancer Patient Coalition(ECPC), and Men’s Health Society(MHS), to organise a landmarkconference on Gender and HealthThrough Life on 14-15 June inCopenhagen, Denmark. Theconference was supported by theDanish Ministry of Gender Equality andwas attended by over 270 participantsfrom over 30 countries. The EuropeanInstitute for Women’s Health, theEuropean Public Health Alliance andMental Health Europe all participatedactively. Please click here for a copyof the programme.
EPF Programme Manager Liuska Sannapresented the preliminary results ofthe EPF Health Technology Assessment(HTA) Survey in the 2012 HTAInternational Conference on 21 June inBilbao, Spain. Results of our HTASurvey set the scene for thediscussion on existing patientinvolvement in HTA and whethertraining and education needs werebeing taken into account.
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EHEALTH: FROM AMBITIONS TOACTIONS
EUROPEAN PATIENTS' ACADEMY -JOIN THE EUPATI NETWORK!
The Arctic Light e-Health Conference(ALEC) 2012 took place in Luleå,Sweden on 19-20 June. Leadingpoliticians, business leaders, operatorsand public sector officials from all overEurope convened to discuss thehealthcare of the future. This year thetheme was "From Policy to Action".Participants looked at how we handlethe increasing numbers of patientswith chronic illnesses, and on theissues raised by the introduction of e-health services.
After a successful kick-off of theEuropean Patients' Academy onTherapeutic Innovation (EUPATI) inFebruary 2012, the EPF-led projectconsortium is busy taking the firststeps. This 5-year project will developeducational material, training coursesand a public information to educatepatients and the lay public aboutmedicines development processes.
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EPF TO VOICE PATIENTS AT EFPIATHINK TANK EVENT
EPF newsletter
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EUROPEAN PATIENTS’ FORUMRue du commerce 311000 BrusselsBELGIUM
Phone : + 32 2 280 23 34Email : [email protected]
Nicola Bedlington and Kaisa Immonen-Charalambous participated in theEuropean Federation of PharmaceuticalIndustries and Associations (EFPIA)Patients’ Think Tank on 5th July 2012.This event is the occasion for Patients’organisations and the pharmaceuticalto have a dialogue on EU policy issuesin the area of health and innovativemedical research.
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This e-newsletter arises from the EPF 2012 Work Programme, which has received funding from the European Union,in the framework of the Health Programme. Disclaimer: The content of this e-newsletter reflects only the author’s views and the Executive Agency is notresponsible for any use that may be made of the information contained therein.
If you no longer wish to receive emails from EPF, simply send an email to [email protected] to unsubscribe.
EPF newsletter
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// AUGUST ISSUE
A WORD FROM EPF PRESIDENT AND EPFDIRECTORWelcome to the August issue of the EPF newsletter. In this issue we are pleased toinform you of some of our plans for autumn, the launch of our youth projectEMPATHY, our input in the European Health Forum Gastein, and some importantpolicy briefs.Follow the link to the EPF video of our new board and their ideas and aspirations forEPF, and read about our development work linked to our new Strategic Plan 2014-2020. We look forward to seeing many of you in the early autumn at various eventsboth in Brussels and elsewhere. In the meantime, warmest greetings for theremaining summer days.
Anders Olauson, EPF President and Nicola Bedlington, EPF Executive Director
ANNUAL YOUTH MEETING: KICK-OFF THE PROJECT EMPATHY
EPF’S PLANS FOR THE EUROPEANHEALTH POLICY FORUM GASTEIN
The Youth Group will meet for thesecond time on 31 August – 2September in Valletta, Malta. Thisyear’s Youth Meeting will serve as the“kick-off” meeting of the first youthproject: “EMPATHY: Europe MeetsYoung Patients”. As announced in theJune issue of our newsletter, theproject application under the Youth inAction programme has been successfuland now it is time for the project toget off the ground.
The 15Th European Health PolicyForum Gastein, 3-6 October 2012, willfocus on “Crisis and Opportunity –Health in a time of Austerity”. In thesetimes of austerity, healthcare faces anincreasing demand due todemographic change, innovation andsteadily improved technology. Gastein2012 will address the core question ofhow health policy and healthcaresystems are going to be shaped in theupcoming decades.
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EPF STRATEGIC PLANNINGWORKING GROUP
EPF WELCOMES THE PROPOSALFOR A NEW EU FRAMEWORK ONCLINICAL TRIALS
UPCOMING EVENTS
31/08/2012 | Chain of Trust AdvisoryBoard Meeting
Brussels, Belgium The meeting aims to present theintermediate results of the Chain of TRUSTproject to the Advisory Board and collectfeedback
EPF attendance:Liuska Sanna
31/8 - 02/09/2012 | 2nd Meeting of theEPF Youth Group
Valletta, Malta This year’s Youth Meeting will serve as the“kick-off” meeting of the first youth project“EMPATHY: Europe Meets Young Patients”and serve as the springboard for the annualmeeting of the EPF Youth Group.
EPF attendance:Walter Atzori, Özgün Ünver
03 & 04/09/2012 | The future of PrimaryCare in Europe IV
Gothenborg, Sweden EPF will introduce the perspective ofpatients in Primary Care as it plays a crucialpoint for patients with chronic diseases as itrepresents the entrance point in healthcare.
EPF attendance:Anders Olauson (speaker)
04 & 05/09/2012 | EUPATI Regional
EPF newsletter
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EPF has initiated a process to developa new Strategic Plan for ourorganisation from 2014 to 2020, whichis the next EU programming period.This will be a critically importantperiod for patients as EPF will makeits best to engage effectively andinfluence developments impacting onthe lives of EU patients.
EPF welcomes the proposal for a newRegulation on Clinical Trials onmedicinal products for human useadopted in July by the EuropeanCommission. The proposed Regulationwill replace the controversial EUClinical Trials Directive 2001/20/EC,which, although it introducedimportant provisions to protectpatients participating in clinical trials,has been widely perceived as havinghad an overall detrimental effect onthe conduct of clinical trials in Europe.
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PROFESSIONAL QUALIFICATIONSDIRECTIVE: MEPS’ REPORTSSUPPORT EPF KEY POINTS
A TOOLKIT TO HELP YOU MAKEYOUR WAY THROUGH THE CROSS-BORDER HEALTHCARE DIRECTIVE
In July the European Parliamentpublished the draft report of the IMCOcommittee, responsible for the reviewof Directive 2005/36 on therecognition of professionalqualifications, and the draft opinion ofthe ENVI committee on the same text.Both reports support important pointsthe European Patients’ Forum raised inits position statement.
EPF sees in the Cross-borderHealthcare Directive the potential toreduce health inequalities for patientsin access to healthcare. We havedeveloped the EPF “toolkit” including aset of recommendations and guidanceon the Directive to help you makeyour way through it.
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"RESEARCH AND INNOVATIONNEED PATIENTS"
CORE EPF COMMUNICATIONTOOLS TO BECOMEMULTILINGUAL
Conference
Frankfurt, Germany EPF is the project coordinator of EUPATIproject
EPF attendance:Nicola Bedlington, Liuska Sanna
04 & 05/09/2012 | RENEWING HeALTH7th Meeting of the General Assembly
Odense, Denmark 7th Meeting of the Project GeneralAssembly
EPF attendance:Walter Atzori (speaker)
05/09/2012 | Clinical Trials Directivestakeholder meeting
Brussels, Belgium Revision of the Clinical Trials Directive
EPF attendance:Kaisa Immonen-Charalambous
11/09/2012 | EUPATI Project AdvisoryBoard
EPF attendance:Anders Olauson
12/09/2012 | EPF Policy Advisory GroupMeeting
Brussels, Belgium Second meeting of 2012
EPF attendance:PAG
13/09/2012 | EPF Board meeting &Sponsors Meeting
EPF offices, Brussels, Belgium Review of the 2011 EPF activities andoverview of the future work that EPF willundertake
EPF attendance:EPF secretariat, EPF Board
13/09/2012 | EuropaBio patients-bioindustry exchange forum
Brussels, Belgium Informal exchange forum between patientgroups and bioindustry
EPF attendance:Kaisa Immonen-Charalambous
17 & 18/09/2012 | 2nd SteeringCommittee Meeting SUSTAINS
San Sebastian, Spain Meeting of the SUSTAINS Consortium
EPF attendance:Walter Atzori (speaker)
EPF newsletter
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EUROPEAN PATIENTS’ FORUMRue du commerce 311000 BrusselsBELGIUM
Phone : + 32 2 280 23 34Email : [email protected]
Ms Bedlington, EPF Director,participated on 23 May 2012 at alandmark meeting co-organised by theEuropean Commission’s DirectorateGeneral for Research and Innovationand the Alliance for BiomedicalResearch in Europe (BioMed Alliance)in Brussels. A report has just emergedfrom this event and is available here.
Readers will notice a brand-new "lookand feel" of the EPF monthlynewsletters and 2011 annual report.These are a first step in a series ofinitiatives to communicate moreeffectively with you.
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SEE THE EPF BOARD ON VIDEO! EPF IS LOOKING FOR AMEMBERSHIP OFFICER
We are proud to present you our newboard on video! Discover what theywould like to bring to EPF from theirown experience and what is their mainconcern within EPF to help drivingbetter health for patients in Europe.
EPF is looking for a MembershipOfficer to develop a membershipstrategy to ensure that EPF serves theneeds of its members to the optimum.This person will provide targeted on-going support and information tomembers on their requests regardingEU funding opportunities andopportunities to participate in projects.
READ MORE »
18/09/2012 | European Alliance forPersonalised Medicine
Brussels, Belgium Second meeting where EPF is an observer
EPF attendance:Kaisa Immonen-Charalambous
25 & 26/10/2012 | EPF RegionalAdvocacy Seminar
Lisbon, Portugal A few seats are still available - Registeronline!
EPF newsletter
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This e-newsletter arises from the EPF 2012 Work Programme, which has received funding from the European Union,in the framework of the Health Programme. Disclaimer: The content of this e-newsletter reflects only the author’s views and the Executive Agency is notresponsible for any use that may be made of the information contained therein.
If you no longer wish to receive emails from EPF, simply send an email to [email protected] to unsubscribe.
EPF newsletter
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// OCTOBER ISSUE
A WORD FROM EPF PRESIDENT AND EPFDIRECTORWelcome to the October’s EPF newsletter. As we go to press, we learn that Vice-President Maroš Šefcovic takes temporary charge of health and consumer portfoliountil a new Maltese Commissioner is appointed – we will keep you informed of anydevelopments through our website news. In this issue read about EPF‘s contributionto the European Health Policy Forum Gastein, our position on the TransparencyDirective and events attended in the context of the Clinical Trials Regulation. EPF’sHTA survey reports are now on line – we also share our plans for next steps inpatient involvement in HTA. EPF has been active in a number of other key meetings,including a conference of nurses working in the mental health field across theEuropean Union and an eHealth Conference in Denmark. We hope you enjoy thisissue of the EPF Newsletter! Warmest greetings, Anders Olauson, EPF President and Nicola Bedlington, EPF Executive Director
REGIONAL ADVOCACY SEMINAR:LET’S GO!
FIRST CONFERENCE ON HEALTHINEQUALITIES
EPF’s 5th Regional Advocacy Seminarwill commence this week in Lisbon,Portugal, on 25-26 October. Focussingon financing of patent organisationsand fundraising, the Seminar will bringtogether 50 patient leaders fromGreece, Italy, Portugal, and Spain tolook at strategies to fund patientgroups during times of austerity. A fullreport will be given in the next issueof the EPF newsletter.
The adoption of a Resolution by theparticipants concluded the FirstConference on Health Inequalities inthe New EU Member States. Theconference, organised by the NationalPatients’ Organisation in Bulgaria andsupported by EPF , was a first steptaken towards creating andimplementing a comprehensive,continuous strategy for tackling healthinequalities as patients are ‘living’them, in the new EU Member Statesand candidate countries.
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GASTEIN 2012: FUTUREA FLAVOUR OF EPF’S POSITION ON
UPCOMING EVENTS
21 & 24/10/2012 | World Health Summit2012
Berlin, Germany Under the theme “Research for Health andSustainable Development”, the event willfocus on issues and possible solutions fornon-communicable diseases and conditionsof global concern
EPF speaker:Tomasz Szelagowski
25 & 26/10/2012 | 5th EPF RegionalAdvocacy Seminar
Lisbon, PT Theme: "Fundraising: Resourcing PatientOrganisations for a Strong PatientMovement". Capacity building seminar forpatient organisations from PT, EL, IT, ES onfundraising
25 & 26/10/2012 | 3rd Pan EuropeanConference on Haemoglobinopathies & rareanaemias
Cyprus Our Board Member, Philippe Chircop, willgive a presentation entitled "Towards amore patient-centred healthcare system &effective services" at 14.30-16.00 sessionon 26 October
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HEALTHCARE MODELS NEED TOINCORPORATE PATIENTS THE MEDICAL DEVICES PROPOSAL
The current global financial, economicand social crises have resulted insubstantial cuts in healthcare budgets.EPF reiterated at the 15th edition ofthe European Health Policy ForumGastein that we believe that theslashing of health budgets should haltas a knee jerk response to the crisis.The crucial element to be incorporatedin future health care models is: thepatient.
Susanna Palkonen, EPF vice president,gave a foretaste of our position on theCommission’s proposal on MedicalDevices at the MedTech Forum, on 11October in Brussels. She highlightedthat, in EPF’s perspective, the futureregulation should aim at achieving ahigh level of patient safety and qualityof care together with improvedtransparency and information forpatients.
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A STREAMLINED PROPOSAL TOFACILITATE CLINICAL TRIALS
“EPF TAKES A STAND ON THE EUTRANSPARENCY DIRECTIVE”
On 24 September 2012 EPF attended alunch debate organised by EuropeanVoice on the European Commission’slegislative proposal for a Regulation onclinical trials. At this event, EPFhighlighted three issues of concern toour members that were not explicitlyaddressed by the other discussants:information to patients and informedconsent; patients’ access to results ofclinical trials; and patient involvementin clinical trials.
National measures on pricing andreimbursement of medicines have adirect impact on patients’ access totherapies. This is why on 1 October wereleased our position statement on theso-called Transparency Directive(Council Directive 89/105/EEC).Overall, EPF welcomes theCommission’s proposal as it marks astep forward for more transparent andeffective processes. However furthersteps are needed to strengthen goodgovernance and improve patients’access to therapies.
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THREE REPORTS TO SHAPEPATIENT INVOLVEMENT IN HTA
EUROPEAN PATIENTS’ ACADEMY:UP, RUNNING AND REAL
EPF speaker:Philip Chircop
25 & 26/10/2012 | Internationalconference on Cross border health care
Bled, Slovania University Medical Centre Ljubljana(Slovenia) organises this conference tostress the importance of changes that awaitus with the introduction of a new EuropeanDirective (2011/24/EU), which governspatient rights in cross-border treatment.
EPF speaker:Kaisa Immonen-Charalambous
29/10/2012 | The Economist Conferenceon "New responses to non-communicablediseases"
Geneva, Switzerland The theme of the conference is"Strengthening health systems, changingbehaviours". Our Director will take part inthe panel "How to incentivise and empowerpatients to manage their care and to adopthealthy lifestyles?"
EPF speaker:Nicola Bedlington
13/11/2012 | Setting standards -Discussing health inequalities in the contextof the European Year of Citizens
Brussels, Belgium This hearing will put the spotlight on mentalealth and homelessness
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Health Technology Assessment (HTA)is a multidisciplinary tool that ideallyshould involve patients’ perspectives;however, in reality there is still a longway to go in achieving meaningfulpatient involvement in HTA. EPF hasjust released three consecutive reportsto help patients gaining a foothold inthe HTA process.
The European Patients’ Academy forTherapeutic Innovation (EUPATI) hasreleased a report about its first stepstowards the development of pan-European and national infrastructuresafter its inaugural regional workshop,held in Frankfurt, Germany, on 5September 2012. On the agenda:National Liaison Teams and NationalPlatforms, network and communicationopportunities, the collection ofeducational material and the deliveryof trainings.
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REPORT “REDESIGNING HEALTHIN EUROPE FOR 2020”
PATIENTS’ VOICE HEARD AT THEHORATIO FESTIVAL ONPSYCHIATRIC NURSING
As member of the EU Task Force ofhigh level advisors on e-Health, ourPresident Anders Olauson haspresented the Task Force’s report“Redesigning health in Europe for2020” at the Danish eHealthObservatory's Annual Meeting on 9September. In this report the grouphas identified five levers for changeand formulated five recommendationsfor action.
Anders Olauson addressed a keynotespeech at the 2nd Horatio Festival2012, the festival of the EuropeanPsychiatric Nurses, on 23 September inStockholm, Sweden. The event wasentitled “Vision, Knowledge andPractice” and our President hasdecided to change the order of thesewords to illustrate the patients’ voicein mental health issues.
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BIOLOGICS AND BIOSIMILARSEXPLORATORY MEETING INBRUSSELS
EFPIA PATIENTS’ THINK TANKMEETING
On 27 September, EPF attended ameeting bringing together healthprofessionals and patient groups todiscuss the challenges and potential ofbiologics and biosimilars, particular inthe current economic climate and-some of the pharmacovigilance andsafety issues linked to biosimilars.
The European Federation ofPharmaceutical Industries andAssociations (EFPIA) Patients’ ThinkTank meeting took place on 28September in Brussels. This regularevent is the occasion for Patients’organisations and the pharmaceuticalindustry to have a dialogue on EUpolicy issues in the area of health andinnovative medical research.
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NEW WEBSITE FOR THE PASQJOINT ACTION!
LAUNCH OF THE EURO HEPATITISCARE INDEX
The European Union Network forPatient Safety and Quality of Care(PaSQ), launched in April 2012, is athree-year Joint Action co-financed bythe European Commission under theHealth Programme. A new website hasbeen launch to provide informationabout the project and the partners butalso about latest updates thanks tonews and event sections.
The European Liver Patients’Association (ELPA) announced thelaunch of the Euro Hepatitis CareIndex in the context of a high-levelmulti-stakeholder workshop on 6November in Brussels, Belgium.
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POLICYMAKERS SUPPORT EPDA’SCONSENSUS STATEMENT
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EUROPEAN PATIENTS’ FORUMRue du commerce 311000 BrusselsBELGIUM
Phone : + 32 2 280 23 34Email : [email protected]
The European Parkinson’s DiseaseAssociation (EPDA)’s The EuropeanParkinson’s Disease Standards of CareConsensus Statement, has been read,supported and endorsed by Europeanpolicymakers since its launch last yearin the European Parliament.
READ MORE »
This e-newsletter arises from the EPF 2012 Work Programme, which has received funding from the European Union,in the framework of the Health Programme. Disclaimer: The content of this e-newsletter reflects only the author’s views and the Executive Agency is notresponsible for any use that may be made of the information contained therein.
If you no longer wish to receive emails from EPF, simply send an email to [email protected] to unsubscribe.
EPF newsletter
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// NOVEMBER ISSUE
A WORD FROM EPF PRESIDENT AND EPFDIRECTORWelcome to the November’s issue of the EPF newsletter. In this issue we aredelighted to share with you the outcomes of our Fifth EPF Regional AdvocacySeminar that took place in October. Please save the date of our next major seminaron eHealth on 23 January. And on 24 January the closing conference of our Chain OfTrust Project will take place. Read the results of the user requirements focus groupson electronic health records that we organised as part of the SUSTAINS project. Wealso share some updates on the Cross-Border Healthcare Directive and EuropeanUnion Network on Patient Safety and Quality of Care (PaSQ) project. Find alsoreports from the events we attended: the Economist Conference on Non-Communicable Diseases, the World Health Summit, the 3rd Pan- EuropeanConference on Haemoglobinopathies and Rare Anaemias, etc. Finally we are happyto welcome a new staff member within our Secretariat: Cristina Padeanu, fromRomania, who will work on the Joint Action PaSQ mentioned above. A warmwelcome to Cristina! We hope you enjoy reading this issue. Warmest greetings, Anders Olauson, EPF President and Nicola Bedlington, EPF Executive Director
HOW CAN WE RESOURCE PATIENTORGANISATIONS IN TIMES OFAUSTERITY?
THE CLOCK IS TICKING ON CROSS-BORDER HEALTHCARE!
The Fifth EPF Regional AdvocacySeminar took place in Lisbon, Portugalon 25-26 October 2012. The theme ofthis year’s seminar was “Fundraising:Resourcing Patient Organisations for astrong Patient Movement”. This was agood opportunity for Patients’Organisations to learn how to diversifytheir funding in order to maintain theircapacity and effectiveness to advocatefor patient’ rights.
On 25-26 October 2012, KaisaImmonen-Charalambous participatedin the International Conference onCross-Border Health Care, held inBled, Slovenia. Our Senior PolicyAdviser presented EPF’s perspective onthis Directive. The Directive will beapplicable from 25 October 2013 whichmeans that Patients Groups will beable to support transposition atnational level.
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UPCOMING EVENTS
21/11/2012 | 4th ‘Patients-MedTechDialogue’
Brussels, Belgium The focus will be on concrete futurecollaboration on two strategic topics of jointinterest - Patient-centered healthcaremodels and transparency and interactionwith patients.
EPF speaker:Nicola Bedlington
21/11/2012 | European Workshop on RiskManagement for Patient Safety
Brussels, Belgium Our senior policy advisor will provide EPF’sposition on Patient Safety
EPF speaker:Kaisa Immonen-Charalambous
27/11/2012 | Friends of Europe's annualHealthcare Summit
Brussels, Belgium Friends of Europe is an independent thinktank for EU policy analysis and debate. Thishealthcare summit focuses on 'Why healthis crucial to European recovery'
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CHAIN OF TRUST: THE CLOSINGCONFERENCE
PATIENTS IN FAVOUR OF HEALTHRECORDS ACCESS
A final conference on 24 January 2013in Brussels will close the EPF-ledproject Chain Of Trust started inJanuary 2011. The main projectfindings and recommendations will beshared with the wide range ofstakeholders as well as futurestrategies to take these forward. Thiswill also be the occasion to increaseyour awareness in telehealth servicesand the user perspective.
The SUSTAINS project is deployingpatient-accessible Electronic HealthRecords (EHR) associated with abasket of related services in 11European regions. EPF has beencoordinating the implementation ofuser requirement focus groups. Thisarticle outlines the SUSTAINS endusers’ views on the envisaged servicesin order to ensure these are aligned tothe needs and expectations of patientsand meet the requirements of healthprofessionals.
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THE EUROPEAN UNION NETWORKON PATIENT SAFETY AND QUALITYOF CARE IS RUNNING
THE ECONOMIST CONFERENCE
The second coordination meeting ofthe new Joint Action, “European UnionNetwork on Patient Safety and Qualityof Care” (PasQ) took place on 3-5October 2012 in Madrid. EPF is astakeholder partner in this three-yearPaSQ Joint Action and we are activelyinvolved in all the main workpackages.
Our Director Nicola Bedlingtonattended the Economist Conference on29 October in Geneva, Switzerland.“New Responses to CommunicableDiseases: Strengthening HealthSystems –Changing Behaviour” wasthe focus of the event and EPFprovided some solutions from thepatients’ perspective.
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PATIENT LINK WORKSHOP: HIGHIMPACT PATIENT ADVOCACY
REPORT ON ‘EU PATIENT GROUPS& THE RELEVANCE OF NUTRITION’
EPF speaker:Nicola Bedlington
28/11/2012 | GSMA Connected Europeevent
Brussels, Belgium The event will explore the potential of aConnected Europe and the role of industry-government partnerships in seizing thisopportunity
28/11/2012 | Patient Advocacy Leaders’Summit
Helsinki, Sweden Susanna Palkonen, EPF Vice President, willspeak about "The European Patient - whoare we, what is our role and what does itmean for the Finnish patient?
EPF speaker:Susanna Palkonen
03/12/2012 | EUPATI ExecutiveCommittee Meeting
Berlin, Germany EPF is the project coordinator of EUPATIproject and will chair the meeting, and inparticular will lead Work Package 6 aboutDeployment and Quality Assurance. Theobjective of this WP6 is to implement theEUPATI expert, education and informationprogrammes at European and nationallevels with three patient audiences, and tomonitor and evaluate on an on-going basisthe quality and impact of the programmes‘delivery
EPF speaker:Nicola Bedlington
06/12/2012 | EHTEL Symposium
Brussels, Belgium The focus is "Fact not fiction: The future ofeHealth is already here" - EPF will providethe patients' perspective view to thesymposium
EPF speaker:Walter Atzori
11/12/2012 | EFPIA Patients Think Tank
Brussels, Belgium Patients’ organisations and thepharmaceutical industry as consumers andproducers of pharmaceutical products set upa joint Think-Tank in order to have adialogue on EU policy issues in the area ofhealth and innovative medical research.
EPF speaker:Nicola Bedlington
17/12/2012 | DuQue Final Conference
The DUQuE project ends with this closingconference entitled “Deepening ourUnderstanding of Quality Improvement inEurope”. The project was aiming at
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Over 60 patient representatives,primarily from the neurological diseasearena came together from 15-17November to participate in the PatientLink Workshop, organised by theMedtronic Foundation. NicolaBedlington set the scene by giving anoverview of the patient involvement inEU-level health policy.
Patients have particular – and diverse- needs as regard nutrition, which arecurrently unmet across the EU. Thefirst conference for EU Patient Groupson nutrition successfully broughttogether patients groups from variousdisease areas, and variousstakeholders working on health andnutrition. A report emerges from thisconference jointly organised by theEuropean Nutrition Health Alliance,EPF and the European GeneticAlliances’ Network (EGAN).
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ACTION PLANS OF HEALTHY ANDACTIVE AGEING
THE NEED FOR PATIENTS’PERSPECTIVE TO FACE CHRONICDISEASES
On 6 November Laurène Souchet, EPFPolicy Officer, attended the 1stConference of Partners of theEuropean Innovation Partnership onActive and Healthy Ageing. One yearafter the delivery of the StrategicImplementation Plan where EPF wasable to contribute a strong patients’perspective, the six Action Groupspresented their action plans to a wideraudience. These plans aim to bringthe benefits of innovation in the fieldof active and healthy ageing toEurope's citizens .
Our Board Member Philip Chircopattended the 3rd Pan- EuropeanConference on Haemoglobinopathiesand Rare Anaemias on 26 October inChyprus. Participants discussedavenues of action to tackle thegrowing public health burden ofchronic and rare diseases in theEuropean region of the W.H.O. Mr.Chircop brought the patients’perspective to the fore.
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NOVEL SOLUTIONS? YES, BUTONLY WITH PATIENTS
THE VALUE OF HEALTH INPRACTICE IN HUNGARY
providing promising theoretical insights andevidence-based toolkits related toimproving the effectiveness of qualityimprovement systems in hospitals
EPF speaker:Nicola Bedlington
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The World Health Summit 2012 tookplace in Berlin, Germany, on 21-25October. ‘Research for Health andSustainable Development’ was thetheme, articulating the urgent need offinding novel solutions for non-communicable diseases and conditionsof global concern. Our Board MemberTomasz Szelagowski took theopportunity to put patients at thecentre of these novel solutions.
On 9 November a conference entitled“The Value of Health in Practice – frompatient perspective” was held at theMinistry of Human Resources (EMMI)in Budapest, Hungary. More than oneyear of legal preparation of theNational Patient Forum (NPF), which isthe contact and advisory board of theState Secretariat for Healthcare, isalmost completed.
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EPF WELCOMES A NEW PROJECTOFFICER!
In November 2012 Cristina Padeanujoined the Secretariat as projectofficer. She was previously responsiblefor health program planning, projectwriting and coordination, monitoringand advocacy. For EPF Cristina willcoordinate the activities of theEuropean Union Network on PatientSafety and Quality of Care (PaSQ)project.
READ MORE »
EPF newsletter
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EUROPEAN PATIENTS’ FORUMRue du commerce 311000 BrusselsBELGIUM
Phone : + 32 2 280 23 34Email : [email protected]
This e-newsletter arises from the EPF 2012 Work Programme, which has received funding from the European Union,in the framework of the Health Programme. Disclaimer: The content of this e-newsletter reflects only the author’s views and the Executive Agency is notresponsible for any use that may be made of the information contained therein.
If you no longer wish to receive emails from EPF, simply send an email to [email protected] to unsubscribe.
EPF newsletter
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// DECEMBER ISSUE
A WORD FROM EPF PRESIDENT AND EPFDIRECTORAs 2012 draws to a close, we are pleased to share a special issue of the EPFDecember e-Newsletter with you. In addition to the usual latest developments ofthe month, you will find the EPF 2012 Annual Review which gives you a glimpse ofsome of the highlights of 2012!In this December issue you will be informed about the progress made with ourstrategic planning for the next EU programming period 2014-2020. There are alsosome important advances on the policy side with updates on Patient Safety, aposition statement on Data Protection and our presentation at the EuropeanParliament on Professional Qualifications. We have had the occasion to make thepatients’ voice heard at various events such as the Patient Advocacy Summit inFinland, the Friends of Europe Summit, the MedTech Dialogue, the ENOPE forum andthe EHTEL symposium.We also anticipate the very near future with two major eHealth events in 2013. On23 January 2013 we will hold a major seminar on eHealth and on 24 January 2013we will close our Chain Of Trust project with a final conference. The programme andsubscription forms for both events are available on EPF website. On behalf of the EPF board and the EPF Secretariat Team we would also like to takethis opportunity to thank you all very much for the excellent cooperation we haveenjoyed over the past year. There have been some really fantastic and memorabletimes working together with our members and our stakeholder allies to advancepatient-centred, equitable healthcare across the European Union. The EPF Board andSecretariat wish you all the very best for the Festive Season. We hope you have arestful and happy break with family and friends, and we look forward to workingtogether with you again in 2013!With our Warmest Greetings, Anders Olauson, EPF President and Nicola Bedlington, EPF Executive Director
REVIEW THIS YEAR WITH EPF AT AGLANCE!
THE EPF EHEALTH SEMINAR ISAPPROACHING!
The Although December is not yetfinished we invite you to look back atour main achievements in 2012. Ouractivities this year have been very
As the EPF eHealth Seminar - on 23January 2013- approaches, here ismore news on this milestone event.Do not miss the opportunity to learn
UPCOMING EVENTS
15/01/2013 | Medical Devices ExpertGroup
Brussels, Belgium European Commission working groupmeeting on Medical Devices
EPF attendance:L. Souchet
14 & 15/01/2013 | JA PaSQ coordinationmeeting
Berlin, Germany EPF is a stakeholder partner in this three-year PaSQ Joint Action and we are activelyinvolved in all the main work packages.
EPF attendance:
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extensive: the kick-off ofunprecedented ambitious projects(EUPATI, JA PASQ, SUSTAINS,EMPATHY), the very real progressachieved with current projects(Renewing Health project,InterQuality), (...)
what EPF has done over the last foryears for patients in the eHealth area.If you did not book your seat yet,please subscribe online as thepreliminary programme andregistration form are now available.
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EPF STRATEGIC PLANNINGWORKING GROUP
PATIENT SAFETY AT THE HEARTOF EPF’S ACTIVITIES
The EPF Strategic Planning WorkingGroup, made up of a cross section ofEPF’s broad membership, met on 20thNovember. The group discussed indetail a working document emergingfrom our strategic planning seminarfollowing our Annual General Meetingin April.
Patient Safety is an on-going priorityfor EPF since the organisation was setup. Our Senior Policy Adviser KaisaImmonen-Charalambous facilitated aworkshop on the role of patients insystem risk management at theEuropean Workshop for patient Safetyand took this opportunity to remindEPF’s key messages in this area.
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EPF PUBLISHES ITS POSITION ONDATA PROTECTION
EPF ADVOCATES THE PATIENTPERSPECTIVE ON PROFESSIONALQUALIFICATIONS
Patients’ fundamental right toprotection of their personal data is animportant issue in diverse contexts.EPF released on 10 December itsposition statement on the EuropeanCommission’s proposal for aRegulation on personal dataprotection. This will ensure thepatient’s voice is heard in debates onthe use of patients’ health and geneticdata in healthcare and research.
As the discussion over the review ofthe Professional QualificationsDirective continues in the EuropeanParliament, EPF has contacted MEPsfrom the ENVI and IMCO committee tobring a patients’ perspective on thedraft reports and amendments tabledby MEPs on the legislative proposal.
Kaisa Immonen-Charalambous, CristinaPadeanu
14 & 15/01/2013 | RENEWING HeALTH9th Project Assembly Meeting
Barcelona, Spain The meeting will help to assess the state ofplay of the project and work package plansand to make decisions regarding projectimplementation for the ensuing 6 months.
EPF speaker:Walter Atzori
17 & 18/01/2013 | 9th EGAN/RocheWorkshop on Strategic Approaches toHealth Policy
Basel, Switzerland The workshop is entitled "In time of crisis:Sustainable Healthcare Systems and theRole of Patient Groups"
EPF attendance:L. Souchet
23/01/2013 | EPF eHealth Seminar
Brussels, Belgium Seminar for patient leaders on eHealthorganised by EPF. The preliminaryprogramme and registration form are nowavailable online.
24/01/2013 | Chain of Trust ClosingConference
Brussels, Belgium This final conference will be the occasion toshare the main project findings andrecommendations with a wide range ofstakeholders. The preliminary programmeand registration form are now availableonline.
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WHAT OUR ROLE MEANS FOR THEFINNISH PATIENT?
WHY HEALTH IS CRUCIAL TOEUROPEAN RECOVERY?
EPF Vice President Susanna Palkonenattended the Patient AdvocacyLeaders’ Summit in Finland on 28November 2012. She gave a snapshotof the rationale of having an umbrellagroup of patients and being part ofthe EPF patient community influencingEU health policy.
The health sector in Europe is facing aperiod of unprecedented change dueto increased demand because ofdemography, the increase in chronicdisease as well as the first reduction inpublic spending on health in almost 40years. The Friends of Europe PolicySummit explored how innovation canhelp Europe to deliver more health forless money. A report will be availablesoon.
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4TH MEDTECH DIALOGUE GUIDING PRINCIPLES FOR ETHICSAND TRANPARENCY
EPF attended the fourth, already well-established, get-together ofrepresentatives of patientsassociations and the Medtech industryon 21 November 2012. Several EPFmember organisations as well asEUCOMED and some of their membercompanies attended the meeting.
EPF has been an active member of thePlatform on Ethics and Transparency(DG Enterprise) set up as part of theTajani Initiative on CorporateResponsibility in the field ofPharmaceuticals. They developed a listof Guiding Principles on promotingGood Governance in thePharmaceutical Sector.
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EUROPEAN NETWORK FORPATIENTS EMPOWERMENT
THE FUTURE OF EHEALTH ISALREADY HERE
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EUROPEAN PATIENTS’ FORUMRue du commerce 311000 BrusselsBELGIUM
Phone : + 32 2 280 23 34Email : [email protected]
Our World Health Summit 2012 seniorPolicy Adviser Kaisa Immonen-Charalambous attended the ENOPEmeeting in Zürich on 14 November.The purpose of the meeting was todiscuss network activities for the nextyears, as well as a major conferencecoming up in 2014 on patientempowerment, and how eachparticipating organisation couldcontribute to the programme.
In an effort to ignite the innovationand economic growth throughsustainable health care delivery,Microsoft has organised a forum on“Innovating for Better Health: DoingNew with Less” on 4 December 2012.Walter Atzori, EPF Senior ProgrammeOfficer, attended the event to providethe patients’ and citizens’ perspectiveon the benefits and limitations of usingICT.
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PUTTING PATIENTS IN THEDRIVING SEAT IN FUTURE DIGITALHEALTHCARE
The European Commission hasunveiled an Action Plan to addressbarriers to the full use of digitalsolutions in Europe's healthcaresystems. The goal is to improvehealthcare for the benefit of patients,give patients more control of theircare and bring down costs.
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EPF newsletter
file:////EPFCENTRAL001/...MMUNICATION/WEBSITE/UPLOADED%20DOCUMENTS/LIBRARY/eNEWSLETTER/Newsletter_dec.html[19/12/2012 12:30:16]
This e-newsletter arises from the EPF 2012 Work Programme, which has received funding from the European Union,in the framework of the Health Programme. Disclaimer: The content of this e-newsletter reflects only the author’s views and the Executive Agency is notresponsible for any use that may be made of the information contained therein.
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