what is the european patients forum - nicola bedlington

8/7/2019 What is the European Patients Forum - Nicola Bedlington

1/13

European Patients Rights Day11,12 April 2011


2/13

EPFEPF who are we ?who are we ?

VISION high quality, patient-centred equitable

healthcare throughout the EU

MISSION to present a strong and united

patients voice 150 MILLION PATIENTS, almost

50 members GOALS

Equal Access

Patient Involvement

Patients perspective

Sustainable patient

organisations

Patient Unity


3/13

Major policy themesMajor policy themes

Patients Rights in CrossBorder Healthcare

Patient Safety

Pharma Package Health Literacy

eHealth

Clinical Trials Medical Devices

Health Technology

Assessment


4/13

ExamplesExamples --Policy successPolicy success

Draft Directive on PharmacovigilanceDIRECT PATIENT REPORTING

Draft Directive on information to the

General Public on Prescription

Medicineso RIGHTS OF PATIENTS, HEALTH LITERACY

New Joint Action on patient safety

and quality of care,o PATIENT INVOLVEMENT-CORE THEME


5/13

Making it workMaking it work national advocacynational advocacy

Reinforcing national patient platforms advocacy andcampaign work using policy advances at EU level

e.g Implementaton of the Animal Testing Directive

e.g Implementation of the Pharmacivigilance Legislation

Direct Patient reportinge.g Ensuring provisions of Directive on Patients Rights inCross Border Healthcare ( National Contact Points,Stakeholders involvement in HTA) are upheld

e.g Coordinated work on Health inequalities and

information to patients, health literacy Stronger collaboration with Health Stakeholder Allies

At national level eg Romania


6/13

Patient InvolvementPatient Involvement-- PrePre--requisiterequisite

VALUE + on the meaningfulinvolvement of patients in EUhealth projects

3 core deliverables widelydistributed, translations

Landmark conference underthe Swedish Presidency,Gothenburg December 2010

EPF representation in major EUlevel health Forums,Consultative Committees andWorking Groups doubled in the

last year


7/13

Model of Patient Involvement

Toolkit for patients organisations

Handbook for project coordinators,

leaders and promoters

Policy Recommendations

Literature review on patient involvement

Database on EU health-related projects

Directory of patient organisations in EU

Overview of legislation on patients rights

VALUE + tools


8/13

Their ImpactTheir Impact

I In a policy environment

E.g Innovation Partnership on Healthy

and active ageing

In a programme environment E;g DG RESEARCH

IMI

At individual research project

level E.g RESPECT

Capacity building level Tools linked to Health Technology

Assesment, Clinical Trials, Structural

Funds, eHealth


9/13

Patients PerspectivePatients Perspective

EPF Manifesto 150 Million Reasons to act campaign-

outreach work with/by our members

EPF - speaker ,chair or moderator in over 50 EU health

meetings each year - ensuring or safeguarding the

patients perspective.

Active support 120 MEPs- all EP Groupings close

relationship with key rapporteurs on main health dossiers

Strong input in European Medicines Agency,

Alliance building with health professionals, other Health

stakeholders


10/13

New Policy DossiersNew Policy Dossiers

Needs and rights of Older Patients

Adherence to medicines / concordance

Personalized Medicines

Medical Devices

Non Discrimination legislation

Bridging prevention and chronic disease

management, health and social policy

Youth Strategy


11/13

Milestones in 2011Milestones in 2011

Annual General Meeting (Spring) capacitybuilding and open space for membersnetworking, Brussels

Regional Advocacy Seminar in Romania Focus collaboration with Health careProfessionals Health Literacy

Meeting the needs and rights of olderpatients Polish EU PresidencyConference second semester

Policy Advisory Group and PatientEvidence Base Worksho s


12/13

20142014--20202020

Next EU Programming PeriodMajor focus patients rights and meaningful

patient iinvolvement

New EU Public Health Programme

8th Framework Programme on Research

and Development ( health component)

Cohesion Policy and Structural Funds

Health in All Policies

2011 development of campaign strategy and

artnershi s


13/13

Key messagesKey messages

We all make a measurable difference

Our strengths

- our members expertise, experience

innovation and solidarity- our collective evidence based

perspective

- our commitment to partnership

- Embedding Patents RightsMeaningful Patient Involvement inthe EU health and social policyenvironment

what is the european patients forum - nicola bedlington

Documents