Patient Seminar Liverpool, UK - October 19, 2013, 09:00-16:00Arena and Convention Centre, Liverpool, Room 3A&B

Dear Participants,The first Patient Seminar, organised by ESGO in 2011 in Milan, called for an ‘umbrella network’ for gynaeco-logical cancer patient organisations and professionals from every country in Europe.In 2012 ENGAGe, the European Network of Gynaecolo-gical Cancer Advocacy Groups, was established to faci-litate the development of national gynaecological can-cer patient groups in Europe; to empower them to be active within their countries and across Europe and to facilitate networking and collaboration between them; to include a patient perspective in initiatives to impro-ve the quality of care and sharing best practice across Europe; to increase patient representation in ESGO and relevant European activities; to advocate patient care policies and practices and access to appropriate care at both national and European levels and to disse-minate information and educate patient groups, health professionals, the public and health decision makers.Thanks to the generosity of our sponsors, ESGO is de-lighted to organise a second Patient Seminar during the 18th ESGO Congress in Liverpool under the theme Gynaecological Cancers in Europe: Patient Advocacy & Collaboration. Aimed at leaders of patient groups,

the seminar will highlight hot topics in gynaecologi-cal oncology while focusing on the role of patient

groups as advocates for change within their countries and at a European level.

For the first time, a highly interactive ‘best practice marketplace’ sessi-

on will provide participants

with the opportunity to discuss issues with colleagues in an informal small group setting. Topics include ‘buil-ding public awareness of gynaecological cancer’s’; ‘cancer and the social environment’ and ‘the patient perspective on standards of care ‘.During the closing session, we will hear how cancer patient groups are securing a voice in Sweden and the U.K., and will discuss with a journalist how to get the gynaecological cancer message right with the media. We will also address gynaecological cancer advocacy issues and agree on next steps.We would again like to express our heartfelt thanks to the sponsors for their generous support and genuine interest in this topic, the speakers for sharing their knowledge and experiences to help us make informed decisions, and to all the participants who have come to Liverpool to learn, and share information and best practice.Patient groups have a unique knowledge about their di-sease, treatment and quality of life—insights that are of great value to researchers and policymakers when priori-ties need to be set. It is only through closer collaboration between all actors that it will be possible to mobilise gre-ater public awareness and improve the care of women with gynaecological cancer wherever they live in Europe.

John Green Louise Bayne Liverpool Gynaecological CEO, Ovacome Cancer Group, UK Co-Chair, ESGO Patient Co-Chair, ESGO Patient SeminarSeminar

ESGO Patient Seminar at ESGO18

Gynaecological Cancers in Europe: Patient Advocacy and CollaborationSeminar Co-chairs: John Green & Louise BayneFormat: Three plenary sessions with one break-out marketplace session

Time Session title

09.00-10.10 Session 1: Setting the scene & ENGAGe

10.10-10.25 Coffee break

10.25-12.00 Session 2: Hot topics in gynaecological cancers – news from research

12:00-12:30 Lunch break

12.30-14.00 Session 3: Best Practice Marketplace (parallel sessions)

14:00-14.15 Coffee break

14.15-15.50 Session 4:Securing a gynaecological cancer patient voice

15.50-16.00 Session 5: Close of meeting

Word of welcome: Co-Chairs: John Green & Louise Bayne

Session 1: Setting the Scene: Gynaecological cancer in Europe, and ENGAGe Chair: Vesna Kesic, Institute of Obstetrics and Gynae-cology Clinical Center of Serbia & Louise Bayne, CEO, Ovacome UK

Take-home message: Understanding today‘s challen-ges in gynaecological cancers from the very common to the rarer forms. Understanding what ENGAGe has achie-ved in the past 12 months in order to bring together pa-tient groups across gynaecological indications. Learning from best practice examples how the patient voice can turn health policy into advocacy opportunities

Presentations:1. Challenges of (gynaecological) cancers in Europe in

2013 and beyond. Speaker: Ate van der Zee, Pro-fessor of Obstetrics and Gynaecology, Groningen, The Netherlands

2. Status update on ENGAGe – how far have we come since ESGO17? Speaker: John Green, Liverpool Gynaecological Cancer Group , UK & Chair ENGAGe

3. The patient voice: turning health policy into oppor-tunity Speaker: Jan Geissler, Co-Founder, CML Advocates Network & Director, European Patients‘ Academy on Therapeutic Innovation, Germany

4. Discussion with audience

Session 2: Hot topics in gynaecological cancers - news on researchChair: Nick Reed, Consultant Clinical Oncologist, Beat-son Oncology Centre, London, UKTake-home message: There is innovation in all discip-lines of gynaecological cancers: vaccination/prevention, surgery, oncology, nursing. Individualised treatment, cli-nical trials. Multi-professionality and multi-disciplinarity would increase outcomes. Pro’s and con’s, what are the limitations.

Presentations:1. Innovation target therapies and individualized me-

dicine: What are the new trends and what about following guidelines vs. individualized treatment?

Speaker: Nicoletta Colombo, Director, Gynaecolo-gical Oncology Department, European Institute of Oncology, Milan, Italy

2. Current options and the ongoing future of clinical trials. Speaker: Jalid Sehouli, Director, Department of Gynecology, Charité, Campus Virchow Clinic & Medical Director, Head of European Competence Center for Ovarian Cancer, Berlin, Germany

3. Securing a patient voice in clinical trials (EU initia-tive) Speaker: Dominika Trzaska, Scientific Officer, European Commission, DG Research & Innovation, Brussels, Belgium

4 Acute and late effects of treatment vs quality of life - taking an integrated approach. Speaker: Mari Lloyd-Williams, Professor of Community Health, University of Liverpool, UK

5. Discussion with audience

Session 3: Best Practice - MarketplaceChair: Jan Geissler, Co-Founder, CML Advocates Net-work & Director, European Patients‘ Academy on Thera-peutic Innovation, GermanyTake-home message: Patient groups across gynaeco-logical diseases already have inspiring success stories of their patient campaign work to share – outstanding projects in a number of gynaecological cancers that have largely impacted patient care in their disease area.

Agreed Marketplace topics: 1. Let’s talk about International collaboration between

our patient groups Speaker: Elisabeth Ross, CEO Ovarian Cancer Canada & Marcia Donziger, Founder & Chief Mission Officer, Mylifeline.org, USA

2. Developing Standards of Care: The Patient perspective Speaker: Louise Bayne, Chief Executive, Ovacome, UK and Vesna Kesic, Institute of Obstetrics and Gynaecology Clinical Center of Serbia

3. How to organize events to raise awareness about gy-naecological cancer and to fundraise for your patient organisation Speaker: Gilda Witte, Chief Executive, Ovarian Cancer Action, UK

4. Taking a concept across national boundaries and cul-tures Speaker: Sarah Beard, Maggie’s Centres UK

Session 4: Securing a gynaecological cancer patient voice Chair: Isabel Mortara, ENGAGe CoordinatorPanel interviewer: Peter O’Donnell, Associate Editor, European Voice

Take-home message: Sharing the Swedish model where patients are included in high level decision ma-king policy forums & the UK model of working between the charitable sector and government; how to get the message right with the media and agreement on key advocacy issues for the ENGAGe network.

1. Health Policy and patient representation I. The Swedish model (2 speakers – 1 representing

government and the other the patient perspecti-ve). Speakers: Gunilla Gunnarsson, Coordinator Cancer Strategy, Swedish Association of Local Authorities and Regions & Barbro Sjölander, Nät-verket mot Gynekologisk Cancer (Sweden)

II. The UK model of working between the charitable sector and government (2 speakers – the chari-table sector perspective). Speakers: Rob Music, Director, Jo’s Cervical Cancer Trust & Annwen Jones, CEO, Target Ovarian Cancer (UK)

III. Discussion

2. Getting the gynaecological cancer message right with the media Speaker: Peter O’Donnell, Associate Editor, European Voice

3. Advocating for change Speaker: Isabel Mortara, ENGAGe Coordinator

I. ENGAGe resources II. Advocacy Topics & discussion

4. Acknowledgement of sponsors

Session 5: Meeting close ESGO’s commitment to the gynaecological cancer patient community Speaker: Vesna Kesic, ESGO President-elect

We would like to take this opportunity to thank our lead sponsors for their

generous support of the ESGO Patient Seminar.

European Society of Gynaecological Oncology | ESGO © 2013

The European Society of Gynaecological Oncology (ESGO) is the principal European so-ciety of gynaecological oncology contributing to the study, prevention and treatment of gy-naecological cancer. Today, ESGO has mem-bers in over 40 countries in Europe.

ESGO’s mission:ESGO strives to improve the health and well-being of Euro-

pean women with gynaecological (genital and breast) cancer through prevention, excellence in care, high quality research and education.

What is ENGAGe?Established in 2012, the

European Network of Gynaecological Cancer Advocacy Groups in Europe is a network of European patient advocacy groups established by ESGO representing all gynaecological can-cers particularly (ovary, endometrial, cervix, vulva and rare cancers).

Why is ENGAGe needed?G There are wide variations in patient care

across Europe.

G Patients are not adequately informed about gynaecological cancer and their management.

G Survivorship issues are not adequately addressed and psychosocial support in general is poor.

The ENGAGe objectives are to:G Facilitate the development of national

gynaecological cancer patient groups in Europe and to facilitate networking and col-laboration between them.

G Disseminate information and share best practices to empower patient groups and improve the quality of care across Europe.

G To increase patient representation in ESGO activities by education on current research and health policy.

G To advocate patient care policies practices and access to appropriate care at both nati-onal and European levels.

G To educate patient groups, health professi-onals, the public and health decision makers.

About ESGO and ENGAGe: The European Voice of Gynaecological Oncology!

Contact us: ENGAGe Secretariat Email: esgo.engage@gmail.com Web: www. esgo.org/ENGAGe/Pages/Home.aspx