Masterclass in Cancer Patient Advocacy
Not eligible for ESCO credits
23.05.2014 - 25.05.2014
Baveno, Italy
MASTERCLASS
Description
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.
LEARNING OBJECTIVES
• 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.
MAIN TOPICS
• 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
ORGANISING SECRETARIAT
Rita De Martini
European School of Oncology (ESO)
Via Turati, 29
20121 Milan (Italy)
e-mail: rdemartini@eso.net
EVENT DEDICATED WEBSITE
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.
ACKNOWLEDGEMENT
ESO is grateful to the following companies for supporting this event:
Eli Lilly, GlaxoSmithKline Oncology, Helsinn, Novartis Oncology and Roche.
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The Masterclass will be held in collaboration with the following European cancer patient organisations:
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Faculty list
FACULTY
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
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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
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Programme
23 May
| 12:15 | Buffet lunch | |
| 13:15 | Opening ceremony | |
| STRATEGIC PLANNING FOR SMALL NON8PROFIT ORGANISATIONS 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 | |
| 16:00 | 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
USING EVIDENCE IN CANCER PATIENT ADVOCACY | |||
| 8:30 | Building evidence about patient experience to support advocacy positions: lessons from the HTA setting K. Paterson | ||
9:30 | Using patient data to support advocacy positions: putting theory into practice.Leveraging cancer registry data to support advocacy positions A.M. Forsea | ||
9:45 | Undertaking patient surveys to gather patient perspectives on important clinical problems G. Sharf | ||
10:00 | 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 | ||
| INVOLVING PATIENTS IN CANCER RESEARCH: PUTTING THEORY INTO PRACTICE 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 | ||
| ENSURING THE LONG-TERM SUSTAINABILITY OF A NON-PROFIT ORGANISATION 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
| MANAGING RISK IN NGOS Session co-ordinator: E. Briers, Europa Uomo - The European Prostate Cancer Coalition | |||
8:30 | 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 | ||
| CANCER OBSERVATORY 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 | ||
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