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3rd ESO Masterclass in Cancer Patient Advocacy

23.02.2018  -  25.02.2018

Lisbon, Portugal

MASTERCLASS

Patient advocacy

Description

Scientific Co-ordinator: K. Redmond, CH
Steering Committee: V. Astratinei, RO - K. Benn, IT - S. Diler, TR - J. Geissler, DE - G. Henning, UK - T. Kolarova, BG - L. Makaroff, BE - K. Mastris, UK - K. Oliver, UK - A. Plate, DE - J. Taylor, UK - A. Stunt, UK - S. Wintrich, UK


The Masterclass in Cancer Patient Advocacy was launched by the European School of Oncology in 2014 to meet the educational needs of highly experienced cancer patient advocacy leaders who have limited opportunities to develop their advocacy skills, get updated on key cancer policy issues and explore how to improve their organisation’s performance.

This third edition of the Masterclass will bring together senior representatives of European and international cancer patient networks as well as a small number of future leaders.

To ensure that the Masterclass meets the needs of senior European cancer patient leaders, ESO has established a steering committee consisting of representatives from a number of the European cancer patient networks.

Selected EU/international cancer patient networks will be invited to send two delegates to the Masterclass (in addition to their representative on the Steering Committee).

LEARNING OBJECTIVES
• Help participants hone their advocacy and leadership skills
• Discuss ways of improving organizational impact and effectiveness
• Review state-of-the-art approaches to evidence based advocacy
• Provide participants with the opportunity to network and share experiences

MAIN TOPICS
• Lobbying for change
• Building effective and sustainable EU cancer patient networks (leadership, effectiveness, challenges of working with industry, Boards)
• Achieving sustainable access to cancer therapies
• Developing advocacy leadership skills (Communication, Persuasion & Influence, Coaching, Interpreting scientific data)
• Moving from anecdotal to evidence based advocacy

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

  • Childhood Cancer International (CCI)
  • CML Advocates Network
  • Europa Donna
  • Europa Colon
  • Europa Uomo 
  • ECPC
  • EURORDIS
  • European Men’s Health Forum (EMHF)
  • International Brain Tumour Alliance (IBTA)
  • International Kidney Cancer Coalition
  • INCA
  • Lung Cancer Europe (LUCE)
  • Lymphoma Coalition Europe
  • MDS Alliance
  • Melanoma Patient Network Europe
  • MPNE Ocular/ Rare Melanoma Group
  • Myeloma Patients Europe (MPE)
  • Pancreatic Cancer Europe (PCE)
  • Thyroid Cancer Alliance

General information

ORGANISING SECRETARIAT
Corinne Hall
European School of Oncology (ESO)
Via Turati 29 - 20121 Milan, Italy
Tel: +39 02 85464522
Fax: +39 02 85464545
Email: chall@eso.net


PARTICIPATING ORGANISATIONS

                       
 
           
           
           
           
           
           
                         

                       
MPNE Ocular/ MPNErare
Network
                         
           
             



ACKNOWLEDGMENTS

ESO is grateful to the following companies for supporting this event:
Amgen, AstraZeneca, Helsinn, Lilly, Merck KGaA, Novartis, Pfizer, Roche

       
       
     
       
       
     
       
               

 

Programme

23 February 2018

11:30 European cancer patient advocacy: An introduction to the community, stakeholder interfaces and key initiatives (optional)
Jan Geissler, CML Advocates Network, DE
12:30 Lunch
13:30 Welcome to the Masterclass and introductions
Kathy Redmond, Masterclass co-ordinator, CH
13:45 Lobbying for Change: Find Your Voice to Create a Better Society
Alberto Alemanno, HEC Paris, FR
15:15 Coffee break
15:45 Building effective and sustainable EU cancer patient networks (PARALLEL WORKSHOPS)
Session Coordinators: Violeta Astratinei, Teodora Kolarova
  GROUP 1: Evaluating effectiveness and impact of patient advocacy organisations
Rosie McLeod, Think NPC, UK
  GROUP 2: Running effective boards
Mike Hudson, Compass Partnership, UK
16:45 1st workshops finish
16:55 GROUP 1: Running effective boards
Mike Hudson, Compass Partnership, UK
  GROUP 2: Evaluating effectiveness and impact of patient advocacy organisations
Rosie McLeod, Think NPC, UK
17:55 Workshops finish/close day 1
18:30 Welcome cocktail (Sky Bar 8th floor)
19:30 Dinner (in hotel)

24 February 2018

08:30 Achieving access to affordable cancer medicines
Session Coordinators: Lydia Makaroff, Geoffrey Henning
  Medicine pricing for dummies
João Carapinha, Carapinha & Company, USA
09:10 Closing the gap between the costs and benefits of cancer medicines
Jean-Pierre Thierry, FR
09:50 Achieving access to affordable cancer medicines: the industry perspective
Branca Barata, PT
10:20

Closing the gap: What role do cancer patient organizations have to play?
Panel Discussion
Panelists: João Carapinha, Jean-Pierre Thierry, Branca Barata
Moderator: Lydia Makaroff

10:45 Coffee
11:15 Achieving access to affordable cancer medicines
  Spotlight on community experience in achieving access to affordable medicines
  • Deborah Maskens - CanCertainty Coalition Campaign for IV/Oral Parity (Canada)
  • Stig Lindahl - Prostate Association Sweden brochure
12:00 Sustainability of cancer care
Tamas Bereczky, EUPATI, DE
13:00 Lunch
14:30 Developing advocacy leadership skills (PARALLEL WORKSHOPS)
Session Coordinators: Karen Benn, Kathy Oliver
  GROUP 1: Effective communication in challenging situations
Sandra Bull, 360° Communication, UK
  GROUP 2: Influencing, Persuading & Negotiating
Alison Dawkins, 360° Communication, UK
  GROUP 3: Preventing burnout when leading a patient organisation
Luzia Travado, Champalimaud Cancer Center, PT
  GROUP 4: Interpreting scientific data
Tamas Bereczky, EUPATI, DE & Bettina Ryll, MPNE, SE
16:00 Coffee
16:30 Developing advocacy leadership skills (PARALLEL WORKSHOPS)
  GROUP 1: Effective communication in challenging situations
Sandra Bull, 360° Communication, UK
  GROUP 2: Influencing, Persuading & Negotiating
Alison Dawkins, 360° Communication, UK
  GROUP 3: Preventing burnout when leading a patient organisation
Luzia Travado
  GROUP 4: Interpreting scientific data
Tamas Bereczky, EUPATI, DE & Bettina Ryll, MPNE, SE
18:00 Close of day 2
19:00 Dinner (outside hotel)

25 February

08:00 Moving from anecdotal to evidence based advocacy
Session Coordinators: Ananda Plate, Sophie Wintrich
  Why evidence and not anecdotes - creating impact
Eric Low, Eric Low Consulting, UK
08:30 What evidence do stakeholders need from the patient community in order to make better informed decisions
Regulator and HTA/payor: Francois Meyer, HAS, FR
Pharmaceutical company: Tony Hoos, Amgen, CH
Clinician: Fatima Cardoso, Champalimaud Clinical Center, PT
Patient, payor: Eric low, Eric Low Consulting, UK
09:15 Evidence based advocacy: examples of impact to date
- Ocular Melanoma, Iain Galloway, MPNE Ocular/ MPNErare network, UK
- Neurofibromatosis patient communities, Stefania Mostaccioli, EURORDIS, IT
10:00 Coffee
10:30 Evidence based advocacy: how to increase impact
- Unmet needs in the NET community, Teodora Kolarova, INCA, BU
-
LIPA Patient Survey to lymphoma patients, Maja Kocic, LCE, RS
-
LuCE report, Mirjami Tran Minh, LuCE, FI
11:30 Taking a lead when engaging with key stakeholders: Community Advisory Boards and multi-stakeholder initiatives
Jan Geissler, CML Advocates Network, DE
12:45 Masterclass closing remarks
Kathy Redmond, Masterclass co-ordinator, CH
13:00 Lunch + departures
14:00 WECAN Meeting (invitation only)

 

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