Doc. 10722

13 October 2005

Representation of patient views in Europe

Motion for a recommendation

presented by Mr Flynn and others

This motion has not been discussed in the Assembly and commits only the members who have signed it

The views of patients are increasingly sought by European institutions in making decisions about health policy in The European Union. In recent years, groups claiming to represent patient organisations across the European Union have grown in number and in prominence. Some of these groups, such as the European Patients Forum, enjoy a high profile and an influential position in the European policy-making process.

Pharmaceutical companies seek to influence this process too.1 One way of influencing policy is through building relationships with patient groups by making donations and supporting campaigns. It is estimated that 76 % of EU-based patient groups received funding from pharmaceutical companies to pay for occasional projects.2 Often these relationships are characterised by a lack of transparency as many patient groups do not declare the identity of their donors. The House of Commons Health Select Committee in the UK published a report on the influence of the pharmaceutical industry in April 2004 which expressed concerns about the close relationship between patient organisations and pharmaceutical companies and the influence pharmaceutical companies may gain as a result.3

Coupled with a lack of transparency are concerns that pan-European groups are not truly representative of patients and patients groups. Their membership does not include many patient organisations or representatives of some medical conditions. The European Patients Forum, which the European Commission favours, and regularly consults, has only 13 members and does not declare its funding sources. Such groups lack credibility and are not truly representative of patients.

The Parliamentary Assembly concludes that it should investigate patient representation in the European Union with particular focus upon ;

i.       ensuring that all patient groups consulted by European institutions are required to publicly declare their funding sources to increase transparency

ii.       measures to ensure that a wide variety of groups are consulted to improve the quality of representation of patients.

Signed (see overleaf)

Signed 4:

FLYNN, Paul, United Kingdom, SOC

ALATALU, Toomas, Estonia, EDG

DODDS, Nigel, United Kingdom, EDG

DUPRAZ, John, Switzerland, ALDE

ETHERINGTON, Bill, United Kingdom, SOC

GRACHEV, Vladimir, Russia, EDG

HÖGMARK, Anders G., Sweden, EPP/CD

JAKAVONIS, Gediminas, Lithuania, ALDE

KUŽVART, Miloš, Czech Republic, SOC

LENGAGNE, Guy, France, SOC

LLOYD, Tony, United Kingdom, SOC

LOBKOWICZ, Jaroslav, Czech Republic, EPP/CD

MARSHALL, David, United Kingdom, SOC

McINTOSH of HARINGEY, Andrew, United Kingdom, SOC

MEALE, Alan, United Kingdom, SOC

O'HARA, Edward, United Kingdom, SOC

PAPADIMITRIOU, Elsa, Greece, EPP/CD

PLATVOET, Leo, Netherlands, UEL

PRENTICE, Gordon, United Kingdom, SOC

VIS, Rudolf, United Kingdom, SOC

1 This became very apparently during debates in 2001 about whether the European Union should loosen controls on direct-to-consumer advertising.

2 ‘Fundraising and the growth of industry involvement. ‘ HSC News Issue 6 April 2004 Published by Patient View p.29.

3 ‘The influence of the Pharmaceutical Industry’ House of Commons Health Select Committee April 2005.

4        SOC: Socialist Group

      EPP/CD: Group of the European People’s Party

      ALDE: Alliance of Liberals and Democrats for Europe

      EDG: European Democratic Group

      UEL: Group of the Unified European Left

      NR: not registered in a group