The Role of Patients in EU Policy Development European Health Forum Gastein October 2003 – Bad Gastein Presented by Erick Savoye Director of the European

The Role of Patients in EU Policy Development

European Health Forum GasteinOctober 2003 – Bad Gastein

Presented by Erick SavoyeDirector of the European Men’s Health Forum

European Health Forum Gastein, Oct 2003 - Page 2

European Patient Advocacy

Background People increasingly demanding and using information

Consumers of health care more empowered and proactive

Rapidly developing EU level coordination Patient advocacy, ‘flavour of the year’

Umbrella groups mostly organised by medical condition/therapeutic areas

General campaigning topics: Increased EU recognition of patient needs

e.g. improved health information to patient, access to innovations in medicines

Strengthening the role of patients in the decision-making process


An Active Movement

Consulting with the Commission: 2001 – EU Health Forum G10 High Level Group (Patient Mobility, Innovation and

Provision of medicines)

Lobbying in Parliament Lobbying activities of larger Cancer, AIDS/HIV groups Economic burden: a key message for other groups Ageing, the next big issue

Growing importance of the role of patient groups Community expands with enlargement Moving boundary for areas of national competence Launch of the EPF


The European Patients Forum

From July 2001… Limited patient representation within the G10

Revision of EU legislation affecting Direct To Consumer Information

The absence of a patient umbrella organisation

Encouragement and support from the Commission

… to creation in Jan 2003 The feat of patient groups

One body to address and be consulted on issues regarding the interest of patients

A strong voice for patients, independent of that of consumers



Objectives To facilitate a forum for all pan-European patient

organisations

To share information in order to strengthen the role of European patients

To offer the views of patients by means of a representative and independent resource

To provide a forum for patient groups to develop common positions on EU health policy issues and lobby on their behalf

To become a point of reference for European Institutions on patient-related issues

To co-operate on projects aimed at improving the health outcomes and quality of life of European patients



Criteria for membership Legitimacy

Representation

Democracy

Accountability and consultation

Transparency

Full and associate members

Council of members

Executive Committee Elected members


The European Men’s Health Forum

A member of the European Patients Forum Witnessed the birth of the EU Health Forum

and the European Patients Forum

Pan-European advocacy organisation that spans many therapeutic areas

Works to improve health outcomesfor men in Europe

Promotes collaboration with EU level stakeholders to include men’s health issues in the EU health policy and research agenda.

Recently published report

More information: www.emhf.org



How are decisions taken and priorities set? Council

Approval budget and accounts Policy positions Membership approval/dismissal Election Executive Committee

Executive Committee Agenda/priorities Administration

No funding

More information: www.europeanpatientsforum.org


The Paradox of the Funding Issue

Some MEPs concerned about industry’s financial support for patient advocates

Pan-European patient groups have clearly demonstrated the value of their contribution…

… they are denied public health support Limited ability for small NGOs to auto finance

Unlike their national counterparts or Pan-European consumer groups, they cannot receive core funding from public health sources

Recommendations of the G10 Medicines Report


The G10 Report

7 May 2002

Funding of Patient Groups

‘Patient groups have an important contribution to make to the development of health and medicines policy by articulating the needs and views of patients, scrutinizing new policy proposals and calling policy makers to account. Concern has been expressed, however about the reliance of small NGOs on external funding, and their, need from time to time, to have recourse to industry funding’

Recommendation 13:

’that the Commission consider providing core funding for European patient groups to enable them to participate independently in the debate and decision-making on health matters in the EU’


Commission Communication

‘A stronger European-based pharmaceutical industry for the benefit of the patient’

1 July 2003

‘To make available, under the new Public Health programme, funding for the patient and other public health organisations for networking activities at an EU level and projects on patient information …’

EPF views

‘The European Patients Forum welcomes the clear focus of the Commission…’ and ’… urges European Institutions to ensure core funding for representative pan-European patient organisations…’

EPF press release Aug 2003


G10: a real opportunity for patients?

The Commission’s support for EPF has now stopped

Uncertainty of the Parliament’s vote over budget line proposal for 2004

EP decision likely to affect the future of the EPF

What about other Pan-European patient groups?

______________

In the meantime, no support and a lot of effort from pan-European patient groups has gone into a long battle, the outcome of which still remains uncertain.

Documents

The Role of Patients in EU Policy Development European Health Forum Gastein October 2003 – Bad Gastein Presented by Erick Savoye Director of the European