2nd Masterclass in Cancer Patient Advocacy
Not eligible for ESCO credits
24.06.2016 - 26.06.2016
Milan, Italy
MASTERCLASS
Description
Steering Committee:
R. Deniel Ihlen (Lung Cancer Europe) - J. Geissler (CML Advocates Network) - G. Henning (Europa Colon) - S. Knox (Europa Donna - the European Breast Cancer Coalition) - K. Mastris (Europa Uomo - the European Prostate Cancer Coalition) - K. Oliver (International Brain Tumour Alliance) - B. Ryll (Melanoma Patient Network Europe) - K. van Rassel (Lymphoma Coalition) - M. Wartenberg (Sarcoma Patients Euronet and International Kidney Cancer Coalition)
Scientific Coordinator: K. Redmond
Dear Masterclass participant,
It is a pleasure to welcome you to the 2nd ESO Masterclass in 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:>
•Active Citizenship Network
•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
•EURORDIS - Rare Disease Europe
•IBTA - International Brain Tumour Alliance
•IKCC - International Kidney Cancer Coalition
•INCA - International Neuroendocrine Cancer Alliance
•Lymphoma Coalition Europe
•LuCE - Lung Cancer Europe
•MDS Alliance
•Myeloma Patients Europe
•Melanoma Patient Network Europe
•Pancreatic Cancer Action
•SPAEN - Sarcoma Patients EuroNet
•Thyroid Cancer Alliance
We also have an excellent faculty with experienced speakers on diverse topics from organisational governance to generating patient evidence. 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 the 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.
You are kindly request to provide us with feedback on the programme. You can do this by completing the online evaluation form.
With best wishes
Kathy Redmond
TARGET AUDIENCE
The Masterclass target audience will include senior representatives of EU cancer patient networks as well as a small number of future leaders. There will be a mentorship programme for future leaders with one senior leader mentoring a future leader throughout the masterclass.
MAIN TOPICS
• NGO governance
• Effective leadership
• Smoothing the transition from small to large organisations
• Developing skills in dealing with the media
• Becoming more impactful at the EU level
• Securing a seat at the policy table
• Generating patient evidence
General information
ORGANISING SECRETARIAT
European School of Oncology (ESO)
Via Turati 29
20121 Milan
Italy
Rita De Martini (rdemartini@eso.net)
Elena Fiore (efiore@eso.net)
Daniela Mengato (dmengato@eso.net)
PARTICIPATING ORGANISATIONS
EVENT DEDICATED WEBSITE
All course materials will be provided electronically through an event dedicated website that will be available till 30 August 2016. 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 and send the online evaluation questionnaire
ACKNOWLEDGMENTS
ESO is grateful to the following companies for supporting this event:
BMS, ELI Lilly, Genomic Health, Helsinn, Merck, Novartis Oncology, Pfizer, Roche.
.
Faculty list
FACULTY
K. Benn, Europa Donna - European Breast Cancer Coalition, IT
T. Bereczky, EAT&G - European AIDS Treatment Group, HU
R. Deniel Ihlen, Lung Cancer Europe (LuCE), NO
J. Geissler, CML Advocates Network/Leukemia Patient Advocates Foundation, DE
G. Henning, EuropaColon, UK
S. Knox, Europa Donna - European Breast Cancer Coalition, IT
Y. Le Cam, EURORDIS, Rare Disease Europe, FR
K. Mastris, Europa Uomo - European Prostate Cancer Coalition, UK
P. McIntyre, Cancer World magazine, UK
M. Militaru, ECPC - European Cancer Patient Coalition, BE
E. Nicod, LSE Health, London School of Economics and Political Science, London, UK
K. Oliver, IBTA - International Brain Tumour Alliance, UK
A. Plate, MPE, Myeloma Patients Europe, BE
K. Redmond, Masterclass Co-ordinator, CH
B. Ryll, Melanoma Patient Network Europe, SE
D. Taylor, The UCL School of Pharmacy, London, UK
C. Thalheim, EMSP - European Multiple Sclerosis Platform, BE
I. van den Neucker, ECCO - European Cancer Organisation, BE
A. Wagstaff, Cancer World Magazine, UK
M. Wartenberg, SPAEN and IKCC, DE
M. Wyatt, Consultant in Non-profit Governance, US
Programme
24 June
13:30 | Welcome F. Peccatori, Scientific Director, European School of Oncology, IT |
Porta Romana meeting room |
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Introduction to the Masterclass K. Redmond, Masterclass co-ordinator, CH |
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EFFECTIVE ORGANISATIONS Session co-ordinator: J. Geissler, DE |
Porta Romana - Plenary | ||
13:45 | Building excellence in non-profit governance M. Wyatt, Consultant in Non-profit Governance and author of “Handbook of NGO Governance”, USA |
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15:30 | Coffee break |
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16:00 | Meeting the challenge of leading a patient organisation Y. Le Cam, EURORDIS, FR |
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18:00 | End of session |
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19:30 | Dinner at 5th floor - Attico Gourmet |
25 June
EFFECTIVE LEADERSHIP Session co-ordinator: S. Knox, IT |
Concurrent Sessions |
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Workshops:Participants to rotate to different CEO - 35’ for presentation/discussion
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W1: Porta Romana
W2: Porta VigentinaW3: Ticinese 1+2 W4: Ticinese 3+4 |
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8:30 | Taking cancer patient organisations to the next level: How to transition successfully from a start-up to a more mature organisation Leadership workshops led by: S. Knox, Europa Donna - the European Breast Cancer Coalition, IT M. Militaru, European Cancer Patient Coalition, BE A. Plate, Myeloma Patients Europe, BE C. Thalheim, European MS Platform (EMSP), BE |
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10:15 |
Coffee break |
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Session co-ordinator: K. Redmond, CH |
Porta Romana - Plenary | ||
11:15 | Developing skills in dealing with the media A. Wagstaff and P. McIntyre, Cancer World Magazine, UK |
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13:15 | Lunch |
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EFFECTIVE PATIENT ADVOCACY Session co-ordinator: K. Oliver, UK |
Porta Romana - Plenary | ||
14:15 | Securing a seat at the table T. Bereczky, European AIDS Treatment Group (EATG), HU |
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15:00
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How EU policy is having an increasing impact on cancer care I. van den Neucker, European Cancer Organisation (ECCO), BE |
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15:30 | Cancer patients’ influence on EU policy: from the first EU Breast Cancer Resolution (2003) to the ECIBC K. Benn, Europa Donna - The Europe, IT |
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16:00 | Coffee break |
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16:30 | Influencing health policy: Lessons to be learnt from other disease areas (Excersise - 30’ discussion with participants rotating through cases) Policy workshops led by: T. Bereczky, EATG, HU Y. Le Cam, EURORDIS, FR C. Thalheim, EMSP, BE |
Concurrent Sessions
Exercise 1: Porta RomanaExercise 2: Porta Vigentina Exercise 3: Ticinese 1-2 |
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18:00 | End of session |
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19:30 | Buffet Dinner - Gazebo Hotel Garden |
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26 June
EVIDENCE-BASED ACTIVISM |
Porta Romana - Plenary | ||
8:30 | Why do we need evidence-based activism in cancer patient advocacy? B. Ryll, MPNE, SE |
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9:00 | Health Technology Assessment and patient-generated evidence E. Nicod, LSE, UK |
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9:45 | What are the requirements for evidence-based activism? Discussion |
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10:15 | Coffee break |
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10:45 | Generating patient evidence: Learning from the experience of cancer patient advocacy groups • K. Oliver, International Brain Tumour Alliance, UK (Patients defining research priorities) • B. Eberhardt, Das Lebenshaus, DE (Patients contributing to the definition of QoL parameters) • C. Roffiaen, Lymphoma Coalition Europe, IT (Using patient surveys in advocacy) • A. Stunt, Pancreatic Cancer Action, UK (Using patient surveys in advocacy) • T. Kolarova, International Neuroendocrine Tumor Alliance, BG (Using patient surveys in advocacy) Each presentation will be 10 minutes There will be a panel discussion at the end of the session |
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CANCER OBSERVATORY Session co-ordinator: G. Henning, UK |
Porta Romana - Plenary | ||
12:00 | Overcoming Cancer in the 21st Century (focus on the potential and challenges associated with immunotherapy) D. Taylor, UCL School of Pharmacy, UK |
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12:45 | Closing K. Redmond, Masterclass Co-ordinator, UK |
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13:00 | Lunch followed by departures |
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