Building Partnerships in Breast Cancer A Skills Sharing Forum for Breast Cancer Patient Groups

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Building Partnerships in Breast CancerA Skills
Sharing Forum for Breast Cancer Patient Groups

• 17 October 2002, Nice, France

www.breastcancer-forum.org
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Building Partnerships in Breast Cancer

• Stella Kyriakides, EUROPA DONNA

www.breastcancer-forum.org
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Translations

• 1 French
• 2 German
• 3 Italian
• 4 Spanish
• 5 English (questions only)

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Todays agenda
Perfect Partners 9.55 The developing role of
the patient organization in breast cancer
care
Professor Jean-Louis Misset,
Medicale Hôpital Saint-Louis,
France 10.10 Working with the pharma industry -
a patient organization perspective
Carolina Hinestrosa,

National Breast Cancer Coalition,
US 10.40 Coffee Break
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Todays agenda
Breast Cancer Advocacy 10.55 European Breast
Cancer Advocacy
Susan Knox,
EUROPA DONNA 11.10 Case Study Examples
Elisabeth Davies,

UK Breast Cancer Coalition (UK BCC)
Carol Bishop,

Breast Cancer Network Australia
Doone Lamb,

Breast Cancer Action Group Australia


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Todays agenda
Advances in Breast Cancer Treatment 11.55 The
latest in treatments, testing and clinical
trials
Dr M Untch,
Ludwig-Maximillians-Universität,
München 12.30 Q A
All 13.00 Lunch

Riviera II

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Todays agenda
Workshops 14.00 - 15.30 Workshop A Growing your
organization Dame Gill
Oliver, Anne-Marie Rice Jacqui Nugent,
Macmillan Cancer Relief

Clipper Room Workshop B Effective use of the
media - raising your issues with the media

Julie Walters Peter Coe,

Media Speak

Frégate Room
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Todays agenda
Workshops 15.45 - 17.15 Workshop C Developing
lobbying strategies - improving patient power

Stella Kyriakides Susan Knox
EUROPA DONNA

Galion Room Workshop D Interpreting clinical
trials in breast cancer - making sense of the
science
Dr M Untch

Ludwig-Maximilians-Universitat, Munchen

Horizon Room
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Welcome Introduction

• Dr Claire Barton
• Clinical Science Leader, Roche

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Welcome
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Our hopes for today

• Provide a forum for sharing and exchange of
  knowledge, experience, and skills for key
  organisations
• Encourage you, the participants, to build and
  develop lasting relationships with peers from
  around the world
• To learn from each other and help each other in
  the continuing fight against breast cancer

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The doctor-patient relationship - a
historical perspective

• lt18th century one-to-one, rich patron
  -subordinate physician, consultation based in
  patients home, symptom-based care (apothecaries
  etc for the masses)
• 19th century rise of large institutions,
  statistics, nosology, histology, physical
  examination - hospital-based physician dominant,
  patient subordinate

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The doctor-patient relationship - a historical
perspective

• First half of 20th century - increasing number
  of effective remedies and diagnostic tools,
  physician specialisation, birth of the NHS (UK)
  patient remains dependent
• Second half 20th century/beginning 21st
• explosion in effective remedies
• rise of Pharma industry and regulatory bodies
• television, computerisation, Internet
• globalisation

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The doctor-patient relationship - a
historical perspective

• Rise of organised patient groups
• well-informed, determined, powerful
• life threatening, but long life expectancy
• National -gt International
• Confrontational attitude to Medical establishment
  and Pharma industry (especially AIDS activists)
  forced dramatic changes)
• Co-operative attitudes also facilitated changes

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Breast cancer in the 1980s
Breast cancer treatment risks still
debated Dangers associated with the treatment of
breast cancer radiation therapy
High breast cancer mortality attributed to cost
of exams 30-40 of the 39, 000 women who die each
year could be saved by early detection
Make own decisions on breast cancer, ex patient
advises Anger that no information was available
on breast cancer to enable women to take an
intelligent part in decisions on their treatment
La mamografia no beneficia a mujeres de menos de
50 Años
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Breast cancer today
El cancer de mama una enfermedad curable
Estamos en el umbral de una revolucion
eltratamiento de los canceres
Diagnose Brust-krebs - das Leben danach
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Building Partnerships in Breast CancerA Skills
Sharing Forum for Breast Cancer Patient Groups

• 17 October 2002, Nice, France

www.breastcancer-forum.org