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Masterclass in Cancer Patient Advocacy

Not eligible for ESCO credits

23.05.2014  -  25.05.2014

Baveno, Italy


Patient advocacy


Steering Committee: K. Apostolidis (ECPC) - E. Briers (Europa Uomo) - J. Geissler (CML Advocates Network) - S. Knox (Europa Donna) - K. Oliver (International Brain Tumour Alliance - IBTA) - B. Ryll (Melanoma Patient Network Europe) - M. Wartenberg (IKCC and SPAEN) - R. Wilson (SPAEN)

Scientific Co-ordinator: K. Redmond (ESO)

Dear Masterclass participant,
It is a pleasure to welcome you to the first ESO Masterclass on Cancer Patient Advocacy and hope that you find the course both valuable and enjoyable. ESO has decided to organise this course because of the limited opportunities available for highly experienced cancer patient advocacy leaders to enhance their understanding of key cancer policy issues and develop their advocacy skills. Over the past few months we have worked with a small steering committee consisting of advocacy leaders representing a number of European cancer patient organisations to develop a programme that we think will be both interesting and of value to participants. Therefore we are really pleased that most of the cancer patient organisations active at a European or international level have decided to send delegates to the Masterclass. Participating organisations include:

• CML Advocates Network/Leukemia Patient Advocates Foundation
• ECPC - European Cancer Patient Coalition
• Europa Donna - the European Breast Cancer Coalition
• Europa Uomo - the European Prostate Cancer Coalition
• EuropaColon
• IBTA - International Brain Tumour Alliance
• INCA - International Neuroendocrine Cancer Alliance
• IKCC - International Kidney Cancer Coalition
• Lymphoma Coalition
• LuCE - Lung Cancer Europe
• Myeloma Patients Europe
• Melanoma Patient Network Europe
• SPAEN - Sarcoma Patients EuroNet

We also have an excellent faculty with experienced speakers on diverse topics from strategic planning to risk management. The Masterclass format is intended to provide plenty of opportunity for interaction and sharing of experiences. Given the calibre of participants attending the meeting we are confident that there will be as much value gained from sharing experiences and networking as will be gained during the formal session.

We are grateful to ESO’s Sharing Progress in Cancer Care partners who have decided to support this meeting and we are happy to welcome a representative from each of these supporting companies to this meeting as an observer.

We hope that this will be the first of many Masterclasses in Cancer Patient Advocacy and therefore kindly request that you provide us with feedback on the programme. You can do this by completing the online evaluation form.

Please enjoy not only the educational input you will receive during the Masterclass but also the beautiful surrounding of Lago Maggiore and the hospitality that we are delighted to offer visitors to this special part of Italy.

• Update leaders of European cancer patient organisations about how to run a successful organisations
• Discuss how cancer patients can have a stronger impact in health policy and cancer research
• Review successful strategies that can be used by European cancer patient organisations to address common problems/issues
• Help participants to develop skills to support their roles as advocates
• Provide a forum for networking and exchange of best practice.

• Managing advocacy organisations
• Using Evidence in cancer patient advocacy
• Securing a patient voice in cancer research
• Ensuring the long-term sustainability of a non-profit organisation
• Managing risk in NGOs
• Cancer observatory

General information

Rita De Martini
European School of Oncology (ESO)
Via Turati, 29
20121 Milan (Italy)
e-mail: rdemartini@eso.net

All course materials will be provided electronically through an event dedicated website that will be available till 30 August 2014. On this website you will find the Masterclass programme together with all available materials from faculty (CVs, presentations, etc.). This website will be updated along the way and new material will be uploaded as soon as provided by the faculty. In order to receive your certificate of attendance by e-mail we kindly ask that you complete the online evaluation questionnaire.


ESO is grateful to the following companies for supporting this event:
Eli Lilly, GlaxoSmithKline Oncology, Helsinn, Novartis Oncology and Roche.



The Masterclass will be held in collaboration with the following European cancer patient organisations:




Faculty list

K. Apostolidis, ECPC - European Cancer Patient Coalition, GR
J. Baker, IBTA - The International Brain Tumour Alliance, UK
K. Benn, Europa Donna - European Breast Cancer Coalition
E. Briers, Europa Uomo - European Prostate Cancer Coalition, BE
A.M. Forsea, Melanoma Patient Network Europe, RO
J. Geissler, CML Advocates Network/Leukemia Patient Advocates Foundation, DE
S. Knox, Europa Donna - the European Breast Cancer Coalition
C. Leaf, Assistant Managing Editor, Fortune Magazine, US
E. Lecointe, Sarcoma Patients Euro Net (SPAEN), FR
S. Lindsell, The Brain Tumour Charity/ECPC, UK
H. Marynissen, PM Risk-Crisis-Change, BE
M. Moudatsou, PRAKSIS - Programs of Developments, Social Support and Medical Cooperation, GR
U. Ohlms, Foundation PATH - Patient’s Tumorbank of Hope, DE
K. Oliver, IBTA - International Brain Tumour Alliance, UK
S. Palkonen, European Patients’ Forum (EPF)/European Federation of Allergy and Airways Diseases Patients’Associations, BE
K. Paterson, University of Glasgow, UK
N. Plambeck, Associate Professor, Strategic Management, HEC, Paris, FR
R. Race, Quality Health Limited, National Cancer Patient Experience Survey, UK
K. Redmond, European School of Oncology and Cancer World Magazine, CH/IT
B. Ryll, Melanoma Patient Network Europe, SE
G. Sharf, CML Advocates Network, IL

D. Stewart, National Institute for Health Research, UK



23 May

12:15 Buffet lunch


Opening ceremony

Session co-ordinator: S. Knox, Europa Donna - The European Breast Cancer Coalition
 13:30 Strategic planning for NGO’s
N. Plambeck
  Developing Europa Donna’s first Strategic Plan
S. Knox

   Group work and feedback
 15:30 Coffee

  Managing organisational change
N. Plambeck
  Implementing Europa Donna’s first strategic plan: successes and pitfalls
S. Knox
  Group work and feedback

 18:00 End of session

19:30  Dinner

24 May


Session co-ordinator: K. Oliver, IBTA - International Brain Tumour Alliance

 8:30 Building evidence about patient experience to support advocacy positions: lessons from the HTA setting
K. Paterson


 Using patient data to support advocacy positions:
putting theory into practice.Leveraging cancer registry data to support advocacy

A.M. Forsea


 Undertaking patient surveys to gather patient perspectives on important clinical problems
G. Sharf


 International Cancer Voices: the views of 350,000 Cancer Patients on 3 Continents and what they tell us about improving cancer care and services
R. Race

 10:30 Coffee break
Session co-ordinators: J. Geissler, CML Advocates Network/Leukemia Patient Advocates
Foundation and B. Ryll, Melanoma Patient Network Europe
 11:00 How patients are changing the face of cancer research: letters and lessons from involvement they need to know
D. Stewart
Best practice presentations from the cancer community: Putting theory into practice
 11:15  M-ICAB and Melanoma
B. Ryll
 11:30 SPAEN’s experience in co-operation with other sarcoma research networks
E. Lecointe
 11:45 A patient-driven biobank - PATH - Patients’ Tumorbank of Hope
U. Ohlms
 12:00 Europa Donna collaboration with BIG (Breast International Group)
K. Benn
 12:15 Patient involvement in academic and industry research
Discussion moderated by Bettina Ryll and Jan Geissler (with contributions from pharmaceutical company representatives attending the meeting)
 13:00 Networking lunch
Session co-ordinator: K. Apostolidis, ECPC - the European Cancer Patient Coalition
 14:30 Meeting the challenge of building sustainable organisations at a time of austerity
S. Palkonen
  Presentation followed by Q&A/Discussion
 15:45 Coffee
 16:00 Building long-term sustainability: putting theory into practice
Expert marketplace:
Managing volunteers (Market manager: J. Baker)
Raising revenues (Market manager: M. Moudatsou)
Financial management (Market manager: S. Lindsell)
Strategic partnerships (Market manager: K. Redmond)
 18:00 End of session
 19:00 Transfer by boat to Dinner (off-site) 

25 May

Session co-ordinator: E. Briers, Europa Uomo - The European Prostate Cancer Coalition


 Managing risk in small organizations
E. Briers - H. Marynissen

 9:30 Moderated interactive session with expert input on risk management strategies for different risks faced by small organizations
E. Briers
 11:00 Coffee break
Session co-ordinator: K. Redmond, European School of Oncology and Cancer World Magazine
 11:15 Changing from Within
C. Leaf
 12:30 Closing ceremony
12:45 Buffet Lunch followed by departures