Overview of the European cancer patient advocacy community, key stakeholder interfaces and key initiatives and projects in evidence-based advocacy and capacity building. Presented by Jan Geissler, Patvocates, at European School of Oncology Masterclass, 23 Feb 2019, Lisbon, Portugal
2. European cancer patient community:
What I will cover in this session
Overview on Networks and umbrellas of the patient community
Collaboration with professional societies and multi-stakeholder initiatives
Involvement of the patient community in…
• European Reference Networks
• public private partnerships and industry initiatives
• regulatory authorities
• medicines research & development
• CABs, evidence-based advocacy, capacity building, EHA
Please make sure you ask your questions!
3. Patient advocacy operates on three levels
Business Use Only 3
Patient support
Inform, support, navigate
Health policy
Influence health policy, patient care
Research
Contribute in partnership with
clinicians, networks and industry
4. EUROPEAN
CANCER
PATIENT
COALITION:
>400 mostly national
patient organisations
WECAN:
Workgroup of leaders
of 20 European
Cancer patient
Advocacy
Networks
ALL CANCERS
RARE
CANCERS
HEMA-
TOLOGY
PAEDI-
ATRIC
EURORDIS:
>600 patient
organisations
in rare diseases
EUROPEAN PATIENTS FORUM
European Cancer Patient Networks
5. Informal workgroup and “think tank” of leaders of 20 pan-European cancer
patient umbrella organisations, initiated in 2015
Share workload for meetings, coordinate our representation in committees
Form a "think tank" to develop ideas on how to cross bridges between
advocacy
Share resources and concepts on joint patient-driven evidence
First activities:
• Reasonable Agreements on interaction of patients advocates with industry
• Fair Market Value project
• Coordinated approach to education of advocates
• Positioning towards Stakeholder Engagement
• Coordination of contribution to research in cancer advocacy
6. COMMON CANCERS:
• European Men Health Forum
(EMHF)
• European Network of
Gynaecological Cancer
Advocacy Groups (ENGAGe)
• EuropaColon
• Europa Donna
• Europa Uomo
• Lung Cancer Europe (LuCE)
• Melanoma Patients Network
Europe (MPNE)
• Pancreatic Cancer Europe
Network
RARE CANCERS:
• European Organisation of Rare
Diseases (EURORDIS)
• International Brain Tumour Alliance
(IBTA)
• International Kidney Cancer
Coalition (IKCC)
• International Neuroendocrine
Cancer Alliance (INCA)
• Thyroid Cancer Alliance (TCA)
• Sarcoma Patient
Advocates European
Network (SPAEN)
• Chordoma Foundation
• European Morbus
Waldenström Network
• Lymphoma Coalition Europe
• Acute Leukemia Advocates
Network
• MDS Alliance
• CML Advocates Network
• CLL Advocates Network
• MPN Advocates Network
• Myeloma Patients Europe (MPE)
• Childhood Cancer International
(CCI)
ALL CANCERS
RARE
CANCERS
HEMA-
TOLOGY
PAEDI-
ATRIC
European disease-specific patient advocacy networks
7. Four European Reference Networks (ERNs) in cancer launched in
2017: Hematology, Rare Cancers, Pediatrics, Genetic cancers
• Initiative of EU and Member States
• Networks of Centers of Excellence
and local healthcare providers
• Establish national healthcare
pathways across all EU countries
• Development and adherence to
clinical guidelines
• Integration of healthcare and
research infrastructure
In 2016, European Patient Advocacy
Groups’ Representatives (ePAGs) were
elected by the patient community to
represent patients in the ERNs
8. ALL CANCERS
RARE
CANCERS
HEMA-
TOLOGY
PAEDI-
ATRIC
Patient Organisations
Workgroup
& European Affairs
Committee
Patient Advocacy
Committee with
16 PO umbrellas
& full board seat
Patient Organisations
Workgroup
& Full Membership
for patient advocates
Institutional
Advisory Board,
Training Courses
Patient
Roundtable
Collaboration with professional
societies and multi-stakeholder
initiatives
10. 11 pan-European hematology networks with 264 European member
organisations in Europe (in EuroBloodNet ERN)
ALL
CANCERS
RARE
CANCERS
HEMA-
TOLOGY
PAEDI-
ATRIC
Chronic Myeloid Leukemia
Chronic Lymhocytic Leukemia
Hemochromatosis
Hemophilia
Immune Thrombocytopenia
Lymphoma
Myelodysplastic Syndromes
Myeloma
Myeloproliferative Neoplasms
Thalassemia
Waldenström's
Macroglobulinemia
ePAG representation
Amanda Bok (EHC)
Ananda Plate (MPE)
Angelo Loris Brunetta (TIF)
Jan Geissler (LePAF)
Pierre Aumont (EWMNetwork)
Sophie Wintrich (MDS Alliance)
Maria Piggin (PNH)
??? (Iron disorders)
11. European Reference Network (ERN) in Rare Cancers:
EURACAN
ALL
CANCERS
RARE
CANCERS
HEMA-
TOLOGY
PAEDI-
ATRIC
Clinical domains
Sarcoma
Female genital
Male genital
Neuroendocrine
Digestive tract
Endocrine
Head and Neck
Skin/Eye
Brain/spinal cord
ePAG involved in
Steering Group,
Task Forces and
Clinical Domains
Kathy Oliver (IBTA)
Isabelle Manneh-Vangramberen (ECPC)
Estelle Lecointe (SPAEN)
Markus Wartenberg (SPAEN)
Teodora Kolarova (INCA)
Jo Grey (AMEND UK)
Iain Galloway (MPNE)
12. Patient involvement in practice within the R&D life cycle
Source: Geissler, Ryll, Uhlenhopp, Leto (2016)
Therapeutic Innovation & Regulatory Science (2017), doi: 10.1177/2168479017706405
High
expertise
in disease
area
required
Medium
expertise
in disease
area
required
Research design and
planning
Research priorities Research conduct and operations
Dissemination
communication
post-approval
Protocol
synopsis
Fundraising for
research
Practical
considerations
Patient
information
Informed
consent
Ethics
review
Study
reporting
Health Technology
Assessment
Post-study
communication
Trial
Steering
Committee
Information to
participant
Setting
research
priorities
Protocol
design
Investigator
meetings
Data &
Safety
Monitoring
Committee
Regulatory
Affairs
13. Involvement in public private partnerships and industry
initiatives
Innovative Medicines Initiative
• EUPATI (Coordination)
• Big Data: HARMONY, (BIG4)
• GetReal
• PARADIGM
• IMI Strategic Governance Group Oncology
EFPIA Patient Think Tank
Patient involvement in Investigator Meetings,
Trial Protocol Review, Data Safety Monitoring Boards
14. Community Advisory Boards, e.g. CML, (Hematology)
Two-way dialogue of the world-wide leaders of
the CML community with clinical development,
medical affairs, market access, patient relations to
improve patients’ well-being and outcomes
Drug development pipeline of the companies
Improving access to drugs
Improve collaboration of companies with
community
Discuss patient information developed by
companies
CAB
15. Spectrum of further
activities
Evidence-based advocacy
• CML Adherence Survey,
CML Therapy-Free Remission
project
• MPE Atlas of Access to Myeloma
Treatment
• Lymphoma Coalition Access
Report
• More of this at this ESO
Masterclass!
Capacity building
• This ESO Masterclass in cancer
patient advocacy
• SPAEN‘s SmartStart
• EUPATI
Perceived barriers to access across countries in relation to self declared needs & health expenditure
(Source: MPE Atlas of Access of to Myeloma Treatment, 2016)
16. Expert patients for patient involvement in R&D:
European Patients‘ Academy
14-month expert training course for
patient advocates on medicines R&D ,
98 graduates from 58 disease areas
500.000 individual users of EUPATI
Toolbox on eupati.eu
1. Discovery of
Medicines
2. Pre-clinical
Development
3. Clinical
Development
4. Clinical Trials
5. Regulatory Affairs,
Drug Safety,
Pharmacovigilance
6. Health Technology
Assessment