ENGAGE PATIENT AWARENESS PROJECTS FOR 2017

ENGAGE PATIENT AWARENESS PROJECTS FOR 2017 Patient Seminar 2017, Nvember 4-6, Vienna t prvide a platfrm fr the patient grups wrking in the area f gynaeclgical cancers tgether, learn, stimulate and build n synergies with each ther and ESGO. Their prgram is designed fr these grups t gain a greater understanding frm different perspectives (disease, plicy, public awareness, clinical trials, patient and plicy and perspectives), t facilitate discussins and stimulate patient grup activities at a natinal level, and identify mechanisms fr develping a cmmn Eurpean Gynaeclgical Cancer vice. See the preliminary prgram in Prject frm 1 in appendix fr this dcument. Survey What Patients want t tell their Dctrs - prepared by prfessinal services, reviewed by ur ESGO Health Prfessinal Team and ENGAGe Members. Survey will be cnducted in apprximately 15 Eurpean Cuntries f ENGAGe members, and results will be analyzed prfessinally. Outcmes will be summarized as a reprt at and will be published in at least 2 Internatinal Jurnals, and presented at a 60-min sessin f ENGAGe at ESGO2017 cngress t cngress participants. Outcmes will be translated int all languages within Engage netwrk, printed and distributed widely (depending the funds raised). See further details at the Prject frm 3 in Appendix fr this dcument Leaving Legacy Awareness Event abut Ovarian Cancer (Flash Mb)- Awareness activity abut Ovarian Cancer and have the patient vice heard, gathering f patients, health care prfessinals, ESGO Cnference participants, media, t raise awareness t varian cancer. Getting media invlved, we will tape the event and distribute thrugh media. Prject backgrund wrk and details will be utlined and team f PR, prject crdinatrs and partners will be finalized by March 2017. The dance will be filmed and distributed thru scial media. Media members will als be invited t the event. At the same time, a leaflet abut Ovarian cancer symptms will be prduced and distributed thrugh the selected shps in the shpping mall. See mre details at the Prject frm 2 at the Appendix fr this dcument. Educatinal resurces Facts & Figures and existing disease specific factsheets (Ovarian, cervical and uterine) will be updated (2017 update), translated int several Eurpean languages (subjects f grant raised), launched at natinal levels and available at ENGAGe website. Translated ENGAGe materials will be further distributed widely thrugh scial media (FB) and as printed materials n cuntry levels. ESGO Patient recmmendatins - patient friendly versin f different materials develped by ESGO fr prfessinals will be designed t assist patients and their families t better understand the mst apprpriate treatment fr sme genital cancers. Fllwing materials will be transfrmed int patient brchures: ESGO Ovarian cancer surgery quality indicatrs, ESGO Ovarian cancer surgery guidelines, ESGO Mrcellatin statement, ESGO Vulva Cancer guidelines and ESMO-ESGO-ESTRO Cnsensus Cnference n Endmetrial cancer. Translatins int different languages are subject f funds raised. Effrts fr having patient friendly materials will cntinue in 2018 with cervical cancer guidelines, cervical cancer Surgery guidelines and quality indicatrs. 1

Ride4wmen t raise awareness and educatin abut cervical cancer preventin and treatment during the bicycle ride acrss Eurpe t imprve the quality f wmen s health and furthermre save lives. Cre f the initiative is the annual bicycle tur, in 2017 frm Osl, Nrway, via Sweden, Denmark, Germany and Czech Republic t Austria, Vienna, hst city f the ESGO 2017 Cngress. During the ride there will be events rganized in the cities, raising awareness and educatin abut HPV preventin, lcal media cverage is expected. See details at the Prject Frm 4 at the Appendix fr this dcument. 2

Appendix 1 - Prject Details PROJECT FORM 1: PATIENT SEMINAR 2017 4-6 NOVEMBER 2017, Vienna Prject Partners ESGO Cuncil, ENGAGe Steering Cmmittee, ENGAGe PAGs, Pharmaceutical Cmpanies, Lcal Businesses and PAGs Prject start and end dates: Nv 4 th t Nv 6 th Prject Managers: ENGAGe C-Chairs Esra Urkmez and Murat Gultekin Prject Aim: 1. Educatins f the Patient Advcacy Grups wh are members f ENGAGe 2. Disseminate infrmatin and share best practices t empwer patient grups and imprve the quality f care acrss Eurpe 3. Increase patient representatin in ESGO by educatin n current research and health plicy Prject Details PRELIMINARY PROGRAM DAY 1, NOV 4 TH, 2017 SATURDAY 7.30 8.30: ESGO RUN 10.00 10.15: PATIENT SEMINAR WELCOME REMARKS ESGO PRESIDENT, ENGAGE CO-CHAIR 10.15 10.30: Cffee break, meet and greet 10.30 11.50: ROUNDTABLE DISCUSSIONS - WHAT IS NEW IN GYNAECOLOGICAL CANCERS? TABLE 1 - OVARIAN (Jnathan Ledermann, UK) TABLE 2 CERVICAL (Francesc Raspagliesi, Italy) TABLE 3 - VULVAR & VAGINAL (Sven Mahner, Germany) TABLE 4 UTERINE (Carien Creutzberg, The Netherlands) 12.00 13.00: LUNCH BREAK Blck 1 Chairs - Chair Cristiana Sessa, Switzerland and Birthe Lemley, Danish Gynae Cancer Patient Sciety, Denmark 13.00 13.35: WHAT IS A CLINICAL TRIAL? DEVELOPMENT OF A NEW DRUG/NEW TREATMENT Cristiana Sessa, Switzerland and Birthe Lemley, Danish Gynae Cancer Patient Sciety, Denmark speakers 15 + 15+ 5 13.35 14.05: 13.35 14.05: MANAGEMENT OF SURVIVORSHIP, ROLE f REPEATED CONTROLS and REHABILITATION - Heidi Dnvan, USA Speaker Invitatin shuld clearly define the cntent: change f bdy image, lss f wrk and cming back t nrmal life and family duties, prlnged fatigue and early menpause, fllw up and rle f repeated cntrls, value f rehabilitatin 14.05 15.05: HPV VACCINATION & SCREENING WHAT IS IT, WHY IT IS IMPORTANT HEALTH PROFESSIONALS VOICE, NGO S VOICE, PATIENT S VOICE Cervical Cancer Screening with HPV DNA: up-t-date inf frm Eurpe - Murat Gultekin, Turkey HPV vaccinatin and future f cervical cancer in Eurpe - Xavier Bsch, Spain, Why we can? Why we cannt? ENGAGe Perspective Maude Anderssen (Sweden) (unspken tpics) 15 + 15 + 15 + 15 15.05-15.30: Cffee break Blck 2: Chair Denis Querleu, France and Esra Urkmez, Dance with Cancer, USA 15.30 16.00: HOW CAN THE PATIENT EVALUATE THE QUALITY OF CARE? Denis Querleu, France 20 + ENGAGE perspective: Birthe Lemley, Danish Gynae Cancer Patient Sciety, Denmark 5 16.00-16.40: NEW TREATMENT OPTIONS IN OVARIAN CANCER Mansr Mirza, Denmark (30 + 10 ) 16.40 17.00 Recap f the day Esra Urkmez, Dance with Cancer, USA 19.00 20.00: DINNER FOR ENGAGE NGOS Exchange the experience 3

DAY 2, NOV 5 TH, 2017 SUNDAY Blck 3: Chairs TBA 8.15 9.15: Blck 3: Chairs TBA 8.15 9.15: LATE EFFECTS OF TREATMENT incl. lympaedema Chair: Elisabeth Aval-Lundqvist, Sweden, Dina Kurdiani, Gergia Fr Raditherapy, R. Ptter, Austria (15 ) Fr Surgery, J. Sehuli, Germany (15 ) Fr Chemtherapy, Elisabeth Aval-Lundqvist, Sweden (15 ) ENGAGE perspectives, Maria Papagergiu (10 ) 9.30 10.30: PRESIDENTIAL ADDRESS MAIN HALL 10.30 10.40: Cffee break 10.40 11.40: ROUNDTABLE DISCUSSION LET THE EXPERT NGOS SPEAK 3 TABLES WITH 1 MODERATOR EACH AND ONE SPEAKER NGO EACH ENGAGE members t switch tables every 20 min TABLE 1 - POLICY ADVOCACY Simna Ene, HmeCare Assciatin, Rmania TABLE 2 - HOW TO GET DRS INVOLVED WITH NGOS Dance with Cancer speaker TABLE 3 WORKING WITH ESGO Denis Querleu and Cristiana Sessa 11.40 12.40: FEEDBACK FROM MEMBERS (Chairs: Esra Urkmez, Dance with Cancer, USA and Murat Gultekin, Turkey) 12.40 13.40: GENERAL ASSEMBLY 13.40 14.20: LUNCH BREAK 14.30 15.30: PROFESSIONALS AWARENESS OF PATIENTS NEEDS ENGAGE SESSION in Hall C prject Shrt Term and Lng Term Objectives: Shrt Term: Intrduce Patient Advcacy Grups t each ther, and t Health Care Prfessinals and exchange ideas, prjects fr future. Teach the patient grups with the state f art knwledge frm the best speakers in Eurpe fr varian and ther gyneclgical cancers Awareness/knwledge f NGOs abut genetic backgrunds and testing in Gyn nclgy, and the benefits f quality f treatment and centers fr gyneclgical cancers with different examples frm Eurpe and searching fr different awareness events acrss Eurpe via member Having a patient seminar reprt in different languages and distributing thse messages acrss Eurpe via members Lng Term: Build a driving frce between PAGs in Eurpe fr Gyneclgical Cancers n Educatin, Awareness. Creating an fficial bridge between science and lcal gvernments via patient NGOs Prject Measures: Number f NGOs attending t patient seminar Patient seminar reprt in different languages 4

Number f press releases/ awareness events rganized by lcal NGOs in a year fr gynae nclgy PROJECT FORM 2: LEAVING LEGACY / PATIENT AWARNESS EVENT ABOUT OVARIAN CANCER IN VIENNA FLASH MOB Prject Partners: business partners, Lcal NGOs, Lcal Health Care Prfessinals, Lcal Businesses, Media Lcal and Internatinal Prject start and end dates: Prject planning starts March 2017 and ends with Flash Mb day Nv 3rd, 2017 Prject Managers: ENGAGe Chair Esra Urkmez, Dr Murat Gultekin, Dr Rene Laky Prject Aim: Apprximately 22,000 wmen are diagnsed each year with varian cancer in the United States, and mre than 65,000 wmen are diagnsed annually in Eurpe. Ovarian cancer is the fifth mst frequent cause f cancer death amng wmen. Despite high respnse rates t platinum-based chemtherapy in the secnd-line advanced treatment setting, apprximately 85% f patients will experience recurrence within tw years. If apprved, PARP inhibitr may address the difficult "watchful waiting" perids experienced by patients with recurrent varian cancer in between cycles f platinumbased chemtherapy. Leaving legacy in the city where the cngress is held and addressing public Raising awareness and educatin abut varian cancer - preventin and treatment t imprve the quality f wmen s health and furthermre save lives. Increase awareness f lcal NGO s and health care prfessinals in their envirnment. Get the media invlved and tape the event and distribute thru media. Sample Flash mb dne in Turkey with Dance With Cancer Assciatin: https://www.yutube.cm/watch?v=cqa9qpf0fa&feature=yutu.be Prject Details: Prject backgrund wrk and details will be utlined and team f PR, prject crdinatrs and partners will be finalized by March 2017. A gathering f patients, health care prfessinals, ESGO Cnference participants, media, t raise awareness t varian cancer. The dance will be filmed and distributed thru scial media. Media members will als be invited t the event. Prject will be held at a majr shpping mall in Vienna n Friday Nvember 3, 2017 late afternn. 5

Messaging related t varian cancer preventin will be develped and a leaflet will be distributed during the day in selected shps with wmen related prducts (jewelry, watches, drugstres, wmen clthes) t peple at cash when paying. Prject Objectives: Raising public awareness and educatin abut varian cancer treatment and preventin. Increasing public awareness and health care prfessinals in their envirnment. 6

PROJECT FORM 3: SURVEY ACROSS EUROPE WHAT PATIENTS WANT TO TELL THEIR DOCTORS? Prject Partners ESGO Cuncil, ENGAGe Steering Cmmittee, ENGAGe PAGs, IPOS (The Internatinal Psych-nclgy Sciety) represents ver 8,000 psych-nclgists, MDs psychiatrists, nclgists, nurses, psychlgists, scial wrkers, mental health cunselrs frm arund the wrld in 50 cuntries. Pharmaceutical Cmpanies, Prfessinal Survey Cmpanies, Health Care Prfessinals and Centers Prject start and end dates: March 2017 Nvember 2017 Prject Managers: ENGAGe Chairs Esra Urkmez, Murat Gultekin, Prfessinal Cnsulting by William S. Breitbart, Member, Bard f Directrs and Frmer President, IPOS Prject Aim: T give feedback t health care prviders (nt limited t dctrs) in gyneclgic nclgy (including breast) frm patients n missing aspects in cunselling during all phases f the care, such as prir the treatment, treatment, fllw-up. T imprve the quality f cmmunicatin between the patients and health care prfessinals The ultimate aim is t imprve the quality f the care. Patients always have limited time with their dctrs; many visits in many different cunties end with unanswered questins, r anxiety r with feeling f being nt understd by their dctrs. Prject will be the vice f the patient thru PAGs netwrking, and will present their need, the vid and their request t the prfessinals thru a prfessinally cnducted and validated survey. The results f the survey will be presented live t the prfessinals during ESGO 2017 Eurpean Gynaeclgical Onclgy Cngress in the main hall. It will als be published in different internatinal jurnals in EU and USA; ne being Internatinal Jurnal f Gyneclgic Onclgy, the fficial jurnal f ESGO. Prject Details: Survey Questinnaire will be cnstructed by Prfessinal Survey Cmpanies, with the help and input f ENGAGE Members (PAGs), ESGO Cuncil Members, Team f Psyc Onclgist, members f IPOS. Pilt test will be run in at least 3 different cuntries/lcatins. Principal Cmpnents Analysis (PCA) will be used t validate the survey. Survey f 25 questins will be dne in apprximately 12 different cuntries/languages and results will be analyzed and reprt will be issued by Sept 2017. The reprt will be translated int many languages and will be published in jurnals as well as ENGAGe magazine, ESGO and ENGAGe website and lcal NGOs websites and scial media channels. Prject Shrt Term and Lng Term Objectives: 7

Shrt Term: Create a slid team/ chain f dctrs, PAGs, and health prfessinals wh will cnduct a multi-natinal survey. Be ne f a kind study t refer back t when it cmes t patient needs. Shw the health care prfessinals unmet needs f the patients, and directly frm their muth. Lng Term: Build Awareness within dctrs in cancer treatments. Be a surce t refer t when educating yung dctrs in the field. (Phase 2 f the prject 2018) See cultural differences between different cuntries and shape the treatments based n patient s unmet needs in treatment knwledge as well as in psychlgical supprt. Expand the study int ther cuntries and ther part f the wrld Prject Measures: Number f PAGs and cuntries participating Number f health prfessinals participating Number f participants frm each cuntry Number f press releases/ publicatins f the reprt 8

PROJECT FORM 4: Ride4Wmen 2017 Osl - Vienna Prject Partners: business partners, lcal NGO s, lcal health care prfessinals and lcal bicycle federatins Prject start and end dates: Jul 3 rd t Jul 16 th, 2017 Prject Managers: Ride4Wmen Chair Rene Laky, ENGAGe Chair Esra Urkmez Prject Aim: Raising awareness and educatin abut cervical cancer preventin and treatment during the bicycle ride acrss Eurpe t imprve the quality f wmen s health and furthermre save lives. Cervical cancer is almst 100% preventable cancer. We have nw very efficient HPV DNA tests fr screening and new nanvalent HPV vaccines. This prject aims t distribute the inf trugh many cuntries alng-side the etap and infrm and r advcate the patients and lcal health authrities fr these new advances in cervical cancer in the 2020 era Educatin abut prducts f ESGO and ENGAGe. Annuncement and advertisement fr ESGO 2017 in Vienna. Increase awareness f lcal NGO s and health care prfessinals in their envirnment. Prject Details: Ride4Wmen is a wmen's cancer awareness initiative in cperatin with ESGO and ENGAGe, which aim t educate in 2017 abut cervical cancer preventin and treatment. Cre f the initiative is the annual bicycle tur. Previus rides frm 2014, 2015 and 2016 are n www.ride4wmen.at https://www.yutube.cm/watch?v=vgfvlcfaav4 9

In July 3, 2017 Ride4Wmen starts in Osl and will get via Sweden, Denmark, Germany and Czech Republic t Austria. In July 16, it will finish in Vienna, the hst city f the ESGO 2017 cnference. During the ride, there will be events rganized in etap cities, raising awareness and educatin abut HPV preventin. Furthermre, the gal is t educate abut prducts f ESGO and ENGAGe, t annunce the ESGO 2017 cnference in Vienna and increase public awareness f lcal NGO s and health care prfessinals in their envirnment. The ride will be filmed and a trailer and shrt film will be prduced. Furthermre, pictures and stries f the ride will be used fr the Ride4Wmen ENGAGe magazine. Prject Shrt Term and Lng Term Objectives: Shrt Term: Raising public awareness and educatin abut cervical cancer treatment and preventin. Educatin abut prducts f ESGO and ENGAGe. Annuncement and advertisement fr ESGO 2017 in Vienna. Increasing public awareness f lcal NGO s and health care prfessinals in their envirnment. Prductin f a Ride4Wmen ENGAGe trailer and film t be used as an inf channel. Can be used by all f ur partners. Prductin f a Ride4Wmen ENGAGe magazine t be used als as an inf channel. Bth the film and the magazine will be prepared by: http://grx.cm/ http://grx.cm/en/prtfli/prtfli-grx/ 10

Lng Term: Reducing the incidence rate f cervical cancer in Eurpe. Reducing the mrtality rate f cervical cancer in Eurpe and therefre save lives. Increasing the strength f lcal NGO s and imprve the cllabratin between them and health care prfessinals. Creating an fficial bridge between science and lcal gvernments via patient NGOs. 11