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European Cancer Patient Advocacy: Introduction to the community, key stakeholder interfaces and key initiatives (Jan Geissler)
- 1. European cancer patient advocacy: Introduction to the community, key stakeholder interfaces and key initiatives ESO Masterclass, Lisbon/PT, 23 Feb 2018 Jan Geissler jan@patvocates.net
- 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
- 9. Patient involvement in regulatory authorities (e.g. EMA)
- 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
- 17. EUPATI Patient Expert Training Courses 1+2: 98 graduates from 58 disease areas 1 Achondroplasia 1 Adrenoleukodystrophy 1 Allergy and airways diseases 1 Arthritis 1 Asperger´s syndrome/Fibromyalge and Chronic Fatigue Syndrome 1 Asthma 1 Attention Deficit Hyperactivity Disorder 1 Autoimmune disease 1 Brain tumours 3 Breast cancer 4 Cancer 1 Cardiovascular 1 Chronic Fatigue 1 Coeliacy 1 Cystic Fibrosis 3 Diabetes 1 Disability 1 Ehlers-Danlos Syndrome 1 Endocrine tumours 2 Endometriosis 1 Epidermolysis bullosa (EB) 1 Fibromyalgia 2 Gaucher Disease 4 General advocacy 1 Genetic Disorders 3 Haemophilia 10 Hematological Cancer 1 Hereditary haemorrhagic telangiectasia (HHT) 2 HIV 1 Incontinent patients 1 Leber’s Hereditary Optic Neuropathy 1 Lipoprotein Lipase Deficiency 1 Lung conditions 1 Lupus 1 McCune Albright syndrome 3 Melanoma 1 Mental Health 4 Multiple Sclerosis 2 Muscular atrophy 6 Muscular Dystrophy 1 Neurofybromatosis 2 Paediatric 1 Paediatric Cancer 1 Parkinson's Disease 1 Primary Immunodeficiences 1 Primary Sclerosing Cholangitis/liver and bile duct disease 1 Pulmonary Hypertension 4 Rare Diseases 1 Rare diseases/Friedrich’s Ataxia 1 Rare diseases/Paroxysmal nocturnal hemoglobinuria 1 Rare diseases/Pituitary 1 Rare diseases/Tuberous Sclerosis 1 Respiratory diseases 1 Rett Syndrome 6 Rheumatic diseases 1 Sight loss 1 Thalassaemia 1 Vasculitis Names on www.eupati.eu: