Report of the OECI Accreditation and Designation Programme

26 May 2021 – General Assembly Simon Oberst, Chair of the A&D Board

What is the OECI Accreditation and Designation Programme aiming to achieve?

• To drive quality improvements for patients

• To provide an independent and objective external quality assessment of Centres

• To provide quality standards which are ambitious in terms of excellence

• To provide pan-European standards which can be applied in any European country and beyond

2 What are the advantages of an OECI accreditation?

. It is the only Europe-wide institutional accreditation which covers both cancer care and research . The Review produces a high quality Improvement Plan (with clear identification of opportunities and a plan to fix them) . There is a real engagement by all disciplines and all levels of staff . The gathering of the data and the self assessment by all departments is a benefit in itself (for self monitoring and learning) . The programme reached 52 European centres in 2021, many more in the pipeline

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How does the A&D Programme add value for patients?

• There are large sections of the questionnaires around patient satisfaction and involvement in the centre

• The peer review is part of a toolbox to improve outcomes for patients

• It disseminates research and implementation of best practice

• The process spurs collaboration and the development of networks

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The A&D Board 2020/21

• Simon Oberst, Cambridge, Chair • Wim van Harten, Arnhem, The Netherlands • Paolo de Paoli, ACC network, Italy • Peter Nagy, Budapest • Jean-Benoît Burrion, Brussels • Gunnar Sæter, Oslo • Eva Gustafsson, Stockholm • Mef Nilbert, Copenhagen • Jozsef Lovey, Budapest (chair of Accreditation Committee)

The Accreditation Committee 2020/21

• Jozsef Lovey, Budapest (Chair)(Previously Gunnar Saeter – whom, thanks!) • Henk Hummel, Groningen • Irène Philip, Lyon • Marek Svoboda, Brno • Mari-Leen Pärn, Estonia • Jorrit Enserink, Oslo • Francesco Monetti (until January 2021 – many thanks) • Rui Silva, Coimbra (until January 2021 – many thanks) Many thanks to the support from:

• The IKNL team: Harriët Blaauwgeers; Willien Westerhuis; Annemiek Kwast (till Nov 2020); Jolanda van Hoeve; Heidi van Doorne; Sylvia Blommestein. • At Cambridge: Kelly O’Reilly • At Genova (SOS Europe): Claudio Lombardo; Giorgia Pesce; Daniela Garbarino; Patrizia Sommella and Roxanna Plesoianu 52 centres now in the programme

Accredited - Cancer Centre - 16 Accredited - Comprehensive Cancer Centre - 24 Newly in the accreditation process - 12 Centres with a Peer Review in 2021 • Istituto Tumori, Milan, Italy 2nd • CROB Basilicata, Italy 2nd • Kuopio University Hospital, Finland • Skäne University Hospital, Lund, Sweden • Sahlgrenska University Hospital, Gothenburg, Sweden • Vejle Cancer Centre, Denmark 2nd • Beaumont Cancer Centre, Dublin • Tartu Cancer Centre, Estonia 2nd • Candiolo Cancer Institute, Turin, Italy • Groningen University Hospital, The Netherlands • Ljubljana Cancer Centre, Slovenia • AP-HP CARPEM Paris, France

Network • ATOP network - Toulouse

The programme is growing across Europe and beyond

• Growth in applications across France to the majority of Cancer Centres • Substantial growth in the Nordic Countries – complete in Finland • New centres in Spain • Nearly complete coverage in Italy and Portugal

• Interest from Poland, Denmark, Chile, Colombia, Vietnam, China, Dublin, Latvia

• Our total cohort of centres produce more than 12,400 research papers annually, have annual research budgets of more than €1 billion, and have treated more than 1 million new cancer patients since their accreditations

Important developments

• Great success with virtual and semi-virtual peer reviews (9) • More than 65 trained auditors in many different disciplines. • New standards for Cancer Networks/Infrastructures (piloted in France in March 2021) – shortly to be published • Participating in iPAAC WP7 and WP10 • Significant input into European Commission and Cancer Mission Board re the planning of Cancer Mission and Beating Cancer Plan. • Excellent Practices project to disseminate – 26 practices across Europe – for Summer 2021 • Steps to improve our Communications • A&D Standards going through ISQua re-accreditation • Manual 3.0 is now operational

Papers published and in preparation

Published 1. 100 European core quality standards for cancer care and research centres. Oberst et al, Lancet Oncology, August 2020 2. Analysing the attributes of Comprehensive Cancer Centres and Cancer Centres across Europe to identify key hallmarks. Kehrloesser et al, Molecular Oncology, March 2021

In preparation 1. Evaluating Comprehensive Cancer Networks; a new tool to drive up quality – featuring OECI’s new European Standards 2. What is a roadmap to creating successful CCCs out of University Medical Centres? – especially relevant to the EU Cancer Mission objective to create Comprehensive Cancer Infrastructures in every Member State.

EU Cancer Mission and Europe’s Beating Cancer Plan

• Recommendation 10 of the Cancer Mission Board:

Set up a Network of Comprehensive Cancer Infrastructures within and across all EU member states to improve the quality of research and care.

• EBCP Flagship 5 to set up a EU Network of National CCCs by 2025 – to reach 90% of eligible patients by 2030 – reinforces that purpose. Joint aims . Diminish inequalities of access to treatment and access to clinical trials . Harmonise standards of care and research using accreditation standards

EU countries with almost full coverage of accredited centres: . Italy . France . Germany . Finland . Portugal

EU countries with no accredited centres yet: . Slovakia . Greece . Croatia . Bulgaria . Malta . Cyprus . Latvia (applying) . Poland (applying) . Slovenia (in progress) . Luxembourg (in progress) 14 The emphasis should be on formation and improvement of centres/networks, prior to accreditation

• OECI has expertise to consult at a local infrastructure level to get there….  Advice on governance and organisation (centres and networks)  Advice on multidisciplinarity (MDTs+researchers)  Consultancy around clinical trials organisation and recruitment  Consultancy on data, samples, standardisation  Tracking outcomes and treatment optimisation  Knowledge exchange programmes  Sharing excellent practices

• Accreditation is then helpful as part of an improvement process to address Innovation, Implementation, Inequalities.

Thank you for your attention

17 BIOBANKING AND MOLECULAR PATHOBIOLOGY WG

Biobanking and Molecular Pathobiology W.G. Activities developed in 2020-2021

Chair: Giorgio Stanta

26th May 2021 BIOBANKING AND MOLECULAR PATHOBIOLOGY WG Activities: 1-Molecular analysis reproducibility: pre-analytical conditions -SPIDIA4P project: CEN /TC 140/WG3 Technical Specifications >>> translated into 15189 ISO International Standards 2-Molecular analysis reproducibility: standardized methods -Instand-NGS project: project for evaluation of NGS products on the market 3-Heterogeneity -HERCULES project: single cell heterogeneity in HGSOC 4-Clinical Research -European Commission Initiative on Breast Cancer (ECIBC) 5-Meetings and Courses -EACR/OECI Cancer Molecular Pathology Course (Virtual 23-24 March 2021) -Oncology Day 2021: Mol diagn and clin res reproducibility: a European Mission 6-Teaching activities -European Molecular Pathology Master BIOBANKING AND MOLECULAR PATHOBIOLOGY WG European Molecular Pathology Master #The master was chosen as a modality to standardize diagnostic molecular pathology in Europe.

# The steering committee of the master (people in charge of the different country molecular pathology initiatives) can modify the program continuously allowing the diagnostic molecular pathology to be always updated.

#The program is based on the already developed experience of the French diploma and the evaluation of it based on other existing courses and diplomas in Europe such the ones in Netherlands and Germany.

#As today diagnostic molecular pathology is directly connected to diagnostics and treatment, the standardization of the analyses is a basic requirement to make them reproducible and exchangeable among European health institutions. BIOBANKING AND MOLECULAR PATHOBIOLOGY WG

Collaboration of BBMP WG: Other Organizations: #Collaboration with BBMRI-ERIC and ISBER for biobanking #University of Nice: Biobanking Master #ESP Molecular Pathology WG #Collaboration with CEN (European Committee for Standardization) #EACR Cancer Molecular Pathology Course (Virtual 23-24 March 2021) #European Commission Initiative on Breast Cancer (ECIBC) #UEMS for the development of European Molecular Pathology Master European Projects: #HERCULES project for single cell heterogeneity in HGSOC #SPIDIA4P Pre-analytical condition of clinical material (CEN, BBMRI-ERIC, ISO) #Instand-NGS project for evaluation of NGS products on the market Working Group Health Economics (2020-2021)

• Board selected • 3 Board meetings, • Lionel Perrier (Fr) • 2 Working group meetings with • Davide Galegati (It) ±30 participants. • Edit Porcneczy (Hu) • Scientific session in Annual • Michael Schlander (Ge) replaced Raul Kiivet (Est) Scientific Meeting 16/6 and • Marien van der Meer (NL) board • 3rd Working Group meeting representative 17/6 planned. • Valesca Retel (NL) Coordinator • WvH (NL) Chair.

Working Group Health Economics

• Support and Liaison with European Fair Pricing Network (EFPN) (exposure in Eu press, Eu parliament and with Commissioners). • Participation of Chair in EACS working group on Health Economics (paper in preparation) • (SUB)Task Force on Methods in Assessing Socio Economic Consequences of Cancer, initiated and chaired by Michael Schlander • Bottom up project on dual/combined treatments • Granted: ”One-shot project”: • Trial on socio-economic consequences for cancer patients

Working Group Health Economics

• Knowledge and project exchange • Execution network of Health Economics projects • Positioning OECI in this field • 3 WG meetings 2021-2022 • Inviting new project proposals.

3 Projects with OECI - EFPN 1. Interviews with hospital pharmacists • Patient access to cancer medicine and availability of drugs

2. OECI survey for oncologists • Use of Targeted Combination Therapy

3. One Shot Patient-trial: for hospitals and patient organizations • Socio-economic consequences trial for cancer patients • ”One-shot grant OECI” Project 1. Patient access to cancer medicine and availability of drugs

• EFPN initiated project

• Interviews and surveys with hospital pharmacists • Currently ongoing

• Focus on direct patient access to innovative cancers medicines

• Represent your country? Contact [email protected] REIMBURSEMENT STATUS (NOV-DEC 2020)

Trastuzumab Countries/Medicines Pembrolizumab Nivolumab Olaparib Niraparib Durvalumab Ipilimumab Pertuzumab Palbociclib Osimertinib Tisagenlecleucel Larotrectinib emtansine

Austria ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✗ ✓ Belgium ✓ ✓ ✓ ✗ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✗ Bulgaria ✓ ✓ ✓ ✗ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✗ Czechia ✓ ✓ ✓ ✓ ✗ ✓ ✓ ✓ ✗ ✓ ✗ ✗ Estonia ✓ ✗ ✓ ✗ ✗ ✗ ✗ ✗ ✓ ✓ ✗ ✗ France ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ Latvia ✓ ✗ ✓ ✗ ✓ ✓ ✓ ✓ ✓ ✓ ✗ ✗ Lithuania ✓ ✓ ✓ ✗ ✓ ✗ ✗ ✗ ✗ ✗ ✗ ✗ The Netherlands ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✗ ✓ ✓ ✓ ✗ Poland ✓ ✓ ✓ ✗ ✗ ✓ ✓ ✓ ✓ ✓ ✗ ✗ Slovenia ✓ ✓ ✓ ✗ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✗

AU: https://www.sozialversicherung.at/oeko/views/index.xhtml BE: www.inami.fgov.be Not reimbursed/ not found on the list of reimbursed medicines NL: https://www.horizonscangeneesmiddelen.nl Reimbursed but not all formula’s CZ: http://www.sukl.eu LV: https://www.zva.gov.lvttps://www.zva.gov.lv All formula’s reimbursed EST: https://www.ravimiregister.ee PL: https://www.dlaprzejrzystosci.pl Time from EMA approval to patient access in three different hospitals

Osimertinib

Durvalumab

Pembrolizumab

Palbociclib

Larotrectinib

Olaparib

Niraparib

Nivolumab

Trastuzumab

Pertuzumab

Ipilimumab

Tisagenlecleucel -750 -500 -250 0 250 500 750 1000 1250 1500 1750 2000 2250 2500 time from EMA approval Hos1 Hos2 Hos3 Facilitators & Categorization Barriers

Supply side Demand side

Reimbursement Special policies for Early access schemes Hospital Physician Patient criteria expensive medicines

Market access agreements Quicker reimbursement & Separate budget for High frequency of clinical Cap on out-of-pocket Nationally implemented (uncertainty) pricing procedure patients in need guideline updates expenditures

Lack of clarity of national Lack of adherence to Multiple layers of decision- Insufficient budget to High co-payments & Decentralized procedure requirements maximum timelines making implement decisions healthcare costs Project 2. Use of targeted combination therapy

• OECI initiative, working-group health economics Project in collaboration with: Dr L. Perrier, Lyon, France • Survey for lung cancer specialists Dr J. O’Mahony, Dublin, Ireland • Focus on: use of expensive drug combinations • Targeted therapy, immunotherapy, tyrosine kinase inhibitors

• Survey will be send out to OECI in June 2021 • Make sure to forward to clinicians (lung cancer specialists) • More info: [email protected]

Project proposal

• Part 1: Conduct a survey among clinicians in OECI centers • Focus on melanoma, colorectal, lung • Availability • Overview of TCT use in European member states • Use of TCTs in OECI centers: is it homogenous? • National and regional policies & decision making around TCTs • Implementation issues & compliance: • Are combinations used with national “permission”?

Combinations included in survey: Melanoma, lung, colorectal • nivolumab + ipilimumab • pembrolizumab + axitinib • Encorafenib + cetuximab • Encorafenib + binimetinib + cetuximab • BRAF-I Encorafenib + binimetinib MEK-I • Dabrafenib + trametinib EGFR-I • Dabrafenib + trametinib + pembrolizumab immunotherapy • Vemurafenib + cobimetinib • Ramucirumab + erlotinib • Erlotinib + bevacizumab • Atezolizumab + bevacizumab Aims of the interview Part 2

Aim: to explore and compare the National initiatives on TCT in terms of policy and decision making across European countries

• Identify the stakeholders involved in TCT prescriptions/authorizations

• government agencies, research institutions, health care professionals, manufacturers, etc.

• Conduct a qualitative study based on semi-structured interviews

• Focus on policies & pricing, HTA

Call for: national experts, policy makers, HTA experts, decision makers on drug approval Project 3. One Shot OECI project: Socio-economic consequences for cancer patients Project in collaboration with: Prof. M. Schlander, Heidelberg, • OECI initiative, working-group health economics Germany • Granted by OECI: “One shot project”

• Assess the socio-economic distress after cancer diagnosis • patient perspective • multi-country / European framework

• Distribution of a survey among patients through hospitals and patient organizations • Aim: 200 patient participants per country

• Represent your country? Contact [email protected]

Project 3. Socio-economic consequences for cancer patients Collaboration confirmed with: • European Cancer Patient Coalition (EU) • Asociación Española Contra el Cáncer (ES) • Vivre Sans Thyroide (FR) • Cancer Support France (FR) • PASYKAF (CY) • Danish Cancer Society (DK) • Norwegian Cancer Society (NO)

Collaboration confirmed with: • Netherland Cancer Institute (NL) • Oslo university hospital (NO) • Institut Curie Hospital (FR) Any • Centre Henri Becquerel (FR) • DKFZ Heidelberg (DE) institution/organization • Masaryk Memorial Cancer Institute (CZ) is welcome to • Institutul Oncologic (RO) • Institut Catalá d'Oncologia (ES) participate! • Arturo López Pérez Foundation (CL)

Cancer Economics WG Session 16th June ”Pricing, Coverage and Access to Innovative Cancer Drugs”

11.00 - Welcome and Update of the European Fair Pricing Network • Wim van Harten (NL) 11.05 - Access to innovative cancer drugs in Europe • Sabine Vogler (Austr.) 11.20 - The drug pipeline and financial sustainability of cancer care provision • Amitabh Chandra (US/Harvard) 11.35 - Innovative policies to reduce drug pricing (review of options and scenarios) • Nora Franzen, Valesca Retèl (NKI) Working Group Health Economics

• Thanks to all contributors, WG-board members, WG attendees, Julie van Coppenolle, Stacey Joosten and Simone Koole.

• Contact: [email protected] OECI Working Group on Cancer Outcomes Research

Patient Reported Measures (PRM) in Oncology Clinical Practice and Research

Giovanni Apolone Scientific Director INT Vice President OECI Milano, May 26 2021 Overview

• The context • A few definitions: OR, RWD and RWE • Patients Reported Measures (PRO and PRE) • Focus on the Cancer Mission • The OECI Initiative • The kick off meeting

Outcome Research

A scientific discipline that describes, interprets and predicts the impact of health care intervention on final outcomes that matter for decision makers” The Consequences of Health Care and Medical Interventions

Clinical PROMs Economic and PREMs The context

• Need of RWD and RWE to complement evidence from (efficacy) CT • Central role of citizens and patients in decison making • Well established role of PRM (PROMs and PREMs) in clinical research • Increasing interest to integrate collection of PRM in routine practice to improve health care and quality • Despite potential benefits, obstacles with the integration into practice • Challenges are for costs,administrative and technical issues A few references RWD and RWE Patient Reported Measures

PRO, Patients Reported Outcomes: are health outcomes directly reported by the patient (self-reporting) who experienced it (in contrast to an outcome reported by someone else)

PREMs, Patient Reported Experience: are measure of a patient's perception of their personal experience of the health care they have received.

Conquering cancer: mission possible

Five intervention areas: 1. understanding 2. prevention 3. diagnosis and treatment 4. quality of life 5. equitable access

13 recommendations for bold actions The EU Cancer Mission

Goal: “By 2030, more than 3 million lives saved, living longer and better”

Diagnostic and Cross-Cutting Understanding Prevention Quality of Life Equitable Access Treatment Actions

13 Recommendations for bold actions

1 Launch UNCAN.eu – a European Initiative to Understand Cancer

2 Develop an EU-wide research programme to identify (poly-) genic risk scores

Support the development and implementation of effective cancer prevention strategies and policies within Member States and 3 the EU

4 Optimise existing screening programmes and develop novel approaches for screening and early detection

5 Advance and implement personalised medicine approaches for all cancer patients in Europe

6 Develop an EU-wide research programme on early diagnostic and minimally invasive treatment technologies

Develop an EU-wide research programme and policy support to improve the quality of life of cancer patients and survivors, 7 family members and carers, and all persons with an increased risk of cancer Create a European Cancer Patient Digital Centre where cancer patients and survivors can deposit and share their data for 8 personalised care

9 Achieve Cancer Health Equity in the EU across the continuum of the disease

Set up a network of Comprehensive Cancer Infrastructures within and across all EU Member States to increase quality of research 10 and care

11 Childhood cancers and cancers in adolescents and young adults: cure more and cure better

Accelerate innovation and implementation of new technologies and create Oncology-focused Living Labs to conquer cancer 12

13 Transform cancer culture, communication and capacity building The First Cancer Mission Call (UCAN) The OECI Initiative on PRM (1)

OECI One Shot Project on PR Measures The OECI Initiative on PRM (2) The Agenda

• 2.30 pm - 2.45 pm* The Why – Giovanni Apolone (rationale and aims) • 2.45 pm - 3.00 pm* The What – Augusto Caraceni ( choice of tools) • The How – electronic assessment & implementation strategies: – 3.00 pm -3.15 pm* The experience of Fond. IRCCS Istituto Nazionale Tumori: PTVOICES project - Brunelli Cinzia – 3.15 pm - 3.3.0 pm* The experience of Princes Margaret Cancer Center Toronto - Camilla Zimmermann – 3.30 pm - 3.45 pm* The experience of Oslo University Hospital - Stein Kaasa, Marianne Jensen Hjermstad – 3.45 pm - 4.00 pm* The experience of the Rigshospitalet of Copenhegan - Helle Pappot • 4.00 pm - 4.15 pm* The role of patients and their advocates in the implementation of PROMs and PREMs – Patrick Miqueu • 4.15 pm - 4.30 pm* PROMs and PREMs for health economic decision- making - Wim H. van Harten • 4.30 pm - 5.30 pm* Discussion elaboration of OECI initiative future plans

Participants

Proposed lines of activity/objectives

• include other centres and experts to identify a common set of valid, reliable an d robust PRM • develop standards guidelines • to scope the adoption of a common platform for routine data collection within the OECI network.

The final aims are to evolve the quality of care delivered and offering a common framework and a platform database for future European research initiative in the context of the future Cancer Mission calls.

Embedding the cancer patient voice now more than ever

#OECI_GeneralAssembly May 26th 2021

Dominique de Valeriola, MD Chair, OECI Collaboration for Good Practices with Patients (CGPP) WG General Medical Director, Institut Jules Bordet, Brussels Patrick Miqueu, PhD, MA Coordinator, OECI CGPP WG Coordinator Research Promotion & Patient Collaborations, Institut Jules Bordet, Brussels

CGPP WG and COVID-19

• COVID-19 dominated our professional lives and changed our priorities • Public and patient involvement has been sidelined • Difficulties for CGPP members to liaise • But maintaining contact and communication

But opportunities… • Evolution of the OECI Model of Patient Involvement • PROMs-PREMs implication

CGPP WG and COVID-19

• COVID-19 dominated our professional lives and changed our priorities • Public and patient involvement has been sidelined • Difficulties for CGPP members to liaise • But maintaining contact and communication

But opportunities… • Evolution of the OECI Model of Patient Involvement • PROMs-PREMs implication

OECI Model of Patient Involvement

COOPERATION Healthcare Professionals Patient-Partners (HP) (PP) Patients, close ones…

Cancer centre Patient (CC) SYNERGY Organisation (PO) OECI Model of Patient Involvement 2021

COOPERATION Healthcare Professionals Patient-Partners, All Professionals CO-CREATION Patient-Experts Patients, close ones…

Cancer centre Patient Network SYNERGY Organisations POLICY Community Involving patients in a pandemic

PISARO: Jules Bordet Patient partners’ group

• From stopping patient meeting … • … to managing virtual meetings • And finally, increasing inclusivity and participation . Digital environment creates opportunities

• LinkedIn group (April 2020) https://www.linkedin.com/groups/13843191/

CGPP WG Governance & Membership

Country Center name First name Last name Function Austria Comprehensive Cancer Center Graz Gerald Sendlhofer Leiter der Geschäftsstelle Comprehensive Cancer Center Graz Austria Comprehensive Cancer Center Vienna Natalija Frank Coordinating Manager for Patient & Care Affairs Belgium Kankercentrum Brussel Mark De Ridder Belgium Institut Jules Bordet (IJB) Patrick Miqueu Coordinator Patient Collaborations Belgium Institut Jules Bordet (IJB) Dominique de Valeriola General Medical Director Belgium AZ Groeninge Philip Debruyne Lead Clinician Croatia Klinika za tumore - Klinicki bolnicki centar Sestre milosrdniceIva Kirac Surgical Oncology Denmark Kræftens Bekæmpelse - Center for Kræftforskning Laila Walther head of Patient support Denmark Kræftens Bekæmpelse - Center for Kræftforskning Bo Andreassen Rix CGPP Steering committee : Denmark Vejle Sygehus, Patienternes Kræftsygehus en del af SygehusAnne Lillebælt Skov Villadsen Senior Consultant Estonia North Estonia Medical Centre Vahur Valvere Head of Oncology and Haematology Clinic Estonia Sihtasutus Tartu Ülikooli Kliinikum Mari-Leen Varendi Quality Manager • Chairperson: Dominique de Valeriola Finland TYKS Syöpäkeskus Mervi Siekkinen PhD, Development manager Finland Tampereen Yliopistollinen sairaala Anne Kairenius Projektiasiamies/Syöpäkeskus-hanke • Coordinator: Patrick Miqueu France Centre Léon Bérard Irène Philip Contact France Centre Léon Bérard Amine Belhabri président de la commission des usagers France Centre Léon Bérard Nathalie Blanc Responsable Communication • Member: Martine Bouyssie (IPC Marseille, France) France Gustave Roussy Anne de Jesus coordonnatrice des relations patients France Institut Curie Sophie Oger-Hodge Quality Director and Risk Management France Institut Paoli-Calmettes Martine Bouyssie Head of the Quality Department • Member: Chiara Ariotti (Humanitas Milano, Italy) France Centre François Baclesse (Caen) Laurence Picard Head of Quality & Risk Management Department France Institut Universitaire de Cancérologie APHP Joseph Gligorov France Institut Universitaire de Cancérologie APHP Diariètou Ndiaye Gueye Medical Coordinator • Member: Ambi Williams (Kings’Health Partner London, UK) Germany Deutsches Krebsforschungszentrum (DKFZ) Stefan Frohling Germany Charité Comprehensive Cancer Center Cornelia Grosse Coordinator Hungary Országos Onkológiai Intézet József Lövey Medical Director Hungary Országos Korányi TBC és Pulmonológiai Intézet Krisztina Bogos Contact (osztályvezető főorvos) Ireland Trinity St. James’s Cancer Institute Maria Kane Quality Manager-Person Centred Care Italy Centro di Riferimento Oncologico Istituto Nazionale TumoriIvana TRUCCOLO head, Scientific & Patients Library Italy Istituto Tumori Giovanni Paolo II, Istituto di Ricovero e CuraAngelo a Carattere ParadisoScientifico Director of Experimental Oncology Italy IRCCS Azienda Ospedaliera Universitaria San Martino - IST-Simona Istituto NazionaleMorganti per la RicercaCompany sul Cancro contact person Public Relations Office Italy Istituto Europeo di Oncologia Pier Luigi Deriu Head Officer Quality and Accreditation (Public relation Office) Italy Istituto Nazionale Tumori -IRCCS "Fondazione G.Pascale" Gianfranco(INT-Pascale) De Feo Contact Italy Istituto Nazionale Tumori Regina Elena Gaetana Cognetti Librarian CGPP contact list ( as of January 2019) Italy Istituto Nazionale Tumori Regina Elena Stefano Canitano Medical Radiologist Italy Istituto Nazionale Tumori Regina Elena Gennaro Ciliberto Scientific Director Italy Ospedale San Raffaele (OSR) Rita Piccolo Ms Italy Istituto Oncologico Veneto IRCCS-IOV Silva Mitro Contact Italy IRCCS, Centro di Riferimento Oncologico della Basilicata (CROB)Giovanni Storto Contact 62 OECI members Italy Istituto Scientifico Romagnolo per lo Studio e la Cura dei TumoriMarna [IRST]-IRCCS Bernabini Quality Manager Italy Azienda Unità Sanitaria Locale di Reggio Emilia - IRCCS IstitutoElena in TecnologieCervi Avanzate e ModelliMedical Assistenziali Library and in Patient Oncologia Library-Responsible Patient167 Information contacts Point Italy Azienda Unità Sanitaria Locale di Reggio Emilia - IRCCS IstitutoMaria in ChiaraTecnologie Bassi Avanzate e ModelliDirector Assistenziali of Medical in Library Oncologia and Patient Library Italy IRCCS Istituto Clinico Humanitas Pamela Ferrari Patient Experience Servizi Clienti Italy IRCCS Istituto Clinico Humanitas Alexia Bertuzzi Oncologist Head of Sarcoma section Italy Istituto di Candiolo FPO-IRCCS Piero Fenu Medical Director Lithuania National Cancer Institute Juventa Sartataviciene Public relations officer Norway Oslo Universitetssykehus (OUS) Anne Grethe Ryen HammerstadSenior advicer in health care and patient safety Portugal Instituto Português de Oncologia de Lisboa Francisco Gentil,Rita E.P.E. (IPO-Lisboa)Castanheira Director of Quality and Risk Management/Patient Management Portugal Instituto Português de Oncologia do Porto Francisco Gentil,Rita E.P.E. (IPO-Porto)Veloso Outpatient Administrator Romania The “Prof. Dr. Ion Chiricuta” Institute of Oncology (IOCN) Vald Schitcu MD, Surgeon Russian Federation Tatarstan Cancer Center “TCC” Ekaterina Ratner Medical Oncologist Slovakia Ústav experimentálnej onkológie SAV Silvia Pastorekova Professor Slovenia Onkološki Inštitut Ljubljana Tanja Marinko Spain Fundación Instituto Valenciano de Oncología IVO Tomás Quirós Morató Medical Director Spain Institut Català d’Oncologia ICO Ana Rodríguez Sweden Karolinska Institute and University Hospital Jonas Bergh Chairman Research and Education (Director) Sweden Skånes Universitetssjukhus Sixten Borg Contact Sweden Uppsala University Hospital Hans Hägglund Medical Director Switzerland University Hospital Zurich Ulrike Sandner The Netherlands Netherlands Cancer Institute Annemarie Kapteijns Advisor Marketing and Relationship management The Netherlands Erasmus MC Cancer Institute Inge Van Eekelen Contact The Netherlands IKNL Integraal Kankercentrum Nederland Monique Becker Advisor The Netherlands Maastricht University Medical Centre Edward Nolle The Netherlands Rijnstate Marjet Docter quality coordinator The Netherlands University Medical Center Groningen Comprehensive CancerIneke Center (UMCG-CCC)Middelveldt Contact Turkey Dokuz Eylül Üniversitesi Onkoloji Enstitüsü Yasemin Baskin Contact Turkey Dokuz Eylül Üniversitesi Onkoloji Enstitüsü Nur Olgun Prof Dr; Head of Institute of Oncology; Director of Pediatric Oncology Department Turkey Anadolu Sağlık Merkezi Emine Kurt Manager of Patient Relations Turkey Anadolu Sağlık Merkezi Irem Ergun Patient relations department leader, General manager United Kingdom The Christie NHS Foundation Trust Jackie Bird Chief Nurse and Executive Director of Quality United Kingdom Cambridge Cancer Centre Michelle Brown Macmillan Co-Production Lead United Kingdom King’s Health Partners Integrated Cancer Centre Ambi Williams Research Manager United Kingdom Imperial College Healthcare NHS Trust Guy Young Deputy Director of Patient Experience #OncologyDays 2021 – CGPP session

Based on the Call of abstracts organised for 2nd edition of OECI PATIENT DAY : one- day conference on Patient involvement

Contributions from professionals and patient advocates where the perspective of the patients into professionals’ activities and developments are promoted.

30 abstracts received, reviewed and scored by 9 experts 9 abstracts selected Perspectives

Collaboration with the Accreditation & Designation Program • Proving a new insight to quality standards • Integrating patients’ needs and perspectives

Collaboration with Cancer Outcomes Research WG • Providing guidance for Patient Involvement in PREMs and PROMs

OECI role in Cancer Mission of the EU Horizon Europe Framework

Program for Research and Innovation

Patient Involvement in PREMs and PROMs context In collaboration with Cancer Outcomes Research WG

Valuing experiential knowledge of patients Reassuring on the importance of patient involvement in research & care Giving confidence that their own contribution can make a difference

Promoting integrative Co-creation IAP2 Participation Spectrum Collaboration for Good Practice with Patients Working Group

Reserve the date: OECI Oncology Days 2021: June 16th 2021 10:00 to 11:00 am