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European Patient Association Network. Presented by Dr Judith Wardle Director, Continence Foundation UK. History. March 2004 meeting of patient groups arranged by Pfizer to: Inform about current trends in diagnosis & treatment of OAB

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european patient association network

European Patient Association Network

Presented by

Dr Judith Wardle

Director, Continence Foundation UK

history
History
  • March 2004 meeting of patient groups arranged by Pfizer to:
    • Inform about current trends in diagnosis & treatment of OAB
    • Discuss current issues & barriers to patient/health professional communication
    • Share information about what we were all doing

ICS CPC 2005

learning from other conditions
Learning from other conditions
  • Presentation by Matilde Leonardi of Italian Federation of Neurological Associations
    • Recognition of increasing patient awareness of information needs
    • Increase in patient-focused research
    • More patients wanting to be proactive in relation to their condition, including influencing research
    • Federation formed including professional input

ICS CPC 2005

meeting 2 august 2004
Meeting 2 August 2004
  • Moved on to focus on possible joint activity:
    • Learning from the work of 2 major continence organisations
    • Workshop discussions on which activity/activities we wanted to start with

ICS CPC 2005

presentation by nancy muller of national association for continence usa
Presentation by Nancy Muller of National Association for Continence (USA)
  • all the different activities they have gradually taken on in over 20 years, noted:
    • the detailed planning required
    • importance of input from industry
    • professional/public co-operation in awareness raising activities

ICS CPC 2005

presentation by judith wardle of continence foundation uk
Presentation by Judith Wardle of Continence Foundation UK
  • How legislative change is achieved:
    • Campaigning must be part of wider activity raising awareness & providing information
    • It takes a very long time, and has to build up using mechanisms in the political process to get a brief mention of continence (in UK parliamentary questions & Early Day Motions)
    • Wait for a simple idea to focus on
    • It costs a lot of money & people’s time

ICS CPC 2005

options we came up with
Options we came up with
  • Conduct research/surveys on barriers to seeking help/treatment
  • European Awareness Event
  • Define a common communication strategy/compile key fact sheets
  • Develop a plan to influence legislation
    • (Choice of option made by e-mail discussion)

ICS CPC 2005

august 2005
August 2005
  • Discussion planned about European Awareness Event but supported by a communication strategy and sheets giving key facts about continence
    • Discussion document prepared in advance by a steering committee of Diane Newman, Peter Junneman, Linda Crumlin & Judith Wardle assisted by staff from Pfizer: via e-mail and telephone conferencing

ICS CPC 2005

what we decided on monday
What we decided on Monday
  • Helpful presentation by Depression & Bipolar Support Alliance – always good to hear experience of other disease areas
  • Agreement in principle about a Continence event – countries might use different subtitles
  • Approach other organisations for co-operation e.g. EAU
  • Need to clarify where any funds would be held and to source manpower for organising

ICS CPC 2005

continued
Continued
  • Experience of UK shows how long a lead up is needed to an awareness week – start November for next September.
  • So for 2006 a website listing events around Europe during the year (ICS help?)
  • Plan for event in 2007, possibly tie in with or announce at ICS in Rotterdam

ICS CPC 2005