work package 7
DESCRIPTION
Work Package 7. Information for patients with rare cancers. WP leader: Francesco De Lorenzo. Summary: ECPC: "Nothing about us without us". Representing > 345 cancer patient groups in 42 countries All cancers – common and rare Run and governed by patients - PowerPoint PPT PresentationTRANSCRIPT
Work Package 7
Information for patients with rare cancers
WP leader: Francesco De Lorenzo
Information network on rare cancers
Summary: ECPC: "Nothing about us without us"
• Representing > 345 cancer patient groups in 42 countries
• All cancers – common and rare• Run and governed by patients
• Promoting timely access to appropriate prevention, screening, early diagnosis, treatment and care for all cancer patients
• Reducing disparity and inequity across the EU
• Encouraging the advance of cancer research & innovation • Increasing cancer patients' influence
over European health and research policy• High visibility with EU Commission, EMA,
EU Parliament (FACE – 100 European Politicians)
Information network on rare cancers
ECPC Advocacy :bridging diversity to support cancer
survivors
European level National level
Coordination & Advocacy
Information network on rare cancers
Work Package 7
Objective:– To identify centres of expertise for rare cancers– To develop and disseminate information for patients
including patients’ associations dedicated to rare cancers
Deliverables:– Development of an informative toolkit to inform
patients on rare cancers– Creation of a list of centres of expertise for rare
cancers to which patients should be referred to
Information network on rare cancers
How? Using ECPC member organisations - to get feedback and
disseminate the information to rare cancer patients. Using key patient advocates to give feedback on the information
material developed. Capacity Building for member organisation to use this information Identify key tool for patients Dissemination of this information to different forums including policy
forums
Together with partners, collaborators, clinicians, patients, scientific societies, health authorities
Information network on rare cancers
Partners WP7
• Associated partner:
Partners involved: ECPC, INT (epidemiology unit), ISS, CCC, UE, INT (oncology unit).
• Collaborating partners:
– EAARC, EPAAC, ESSO, ESO, INSERM, Centre of Leon Berard, ESMO, LeukaNet, ECCO
Information network on rare cancers
Milestones
Analyse the patient information status quo before developing the informative toolkit and discuss with the project
Establish a patient network for rare cancer patients building on the already existing networks
Develop together with the partners a questionnaire and conduct the survey meant to identify the clinical centres of expertise
Publish a list of patients associations dedicated to rare cancers (additional organisations will be added throughout the duration of the project)
Prepare 6 reports on the results of the workshops to train patients and discuss the results of the survey to identify canters of expertise
Information network on rare cancers
Information network on rare cancers
Organization Country
1Bulgarian Academy of Management of Pain, access to oppioids and palliative care Esperanza Bulgaria
2 Diagnoza CML Czech Republic3 Lyle Patientforening for Lymfekraeft og Leukaemi Denmark4 Anvolt (National Association Voluntary Against Cancer) Italy5 Italia Glioblastoma Multiforme Italy6 Gruppo AIL Pazienti LMC * Italy7 OHLB, 'Kraujas' Lithuania8 Lithuania Rare cancer patients advocacy group Lithuania9 Waldenström’s Macroglobulinemia network (EWMnetwork) Netherland
10 Stowarzyszenie Pomocy Chorym na GIST (GIST Patients’ Aid Association) Poland11 Nationwide Association of the CML Patients Aid Poland12 Polish Cancer Patient Coalition* Poland13 Nationwide Association of CML Patients Aid* Poland14 Myeloma Euronet Romania Romania15 Asociatia Little People Romania Romania16 Romanian Association against Leukemia* Romania17 Romanian Rare Cancers Association* Romania18 Association Ilco-Stoma RS BL* Serbia19 Gynsam, The Gynaecological Cancer Patients National Coalition* Sweden20 Paws-Gist UK21 Gist Support UK UK22 Lymphoma Association UK23 brainstrust: the Meg Jones Brain Cancer Charity UK24 International Brain Tumour Alliance (IBTA) UK25 Kidney Cancer Association USA
*Associations that haven't answered yet to the questionnaire
Patient Organisations
attended Masterclass
______________ECPC will
identify one lead patient advocate
per Member State to
coordinate and liaise with ECPC
Secretariat
Information network on rare cancers
Associations to be contacted Organization Country
1Patient Group for lymph and leukemia cancer patients Denmark
2German Leukaemia and Lymphoma Aid / Deutsche Leukaemie- und Lymphom-Hilfe Germany
3 Leukaemie-Online e.V. Germany
4
Contactgroep Myeloom and Waldenström Patienten (CMWP)/MM&WM Patient Association Netherland
5Carita Foundation - Life with Multiple Myeloma Poland
6 Stowarzyszenie Pomocy Chorym Na Gist Poland
7 Spanish Association of Lymphoma Sufferers Spain
8 Swedish Brain Tumor Association Sweden
9 CML Support Group UK Uk
10Brainstrust: The Meg Jones Brain Cancer Charity Uk
Information network on rare cancers
Survey Conducted with Patient Organisations to identify main activitues
Information network on rare cancers
Unmet Health Needs of rare cancer patients
Information network on rare cancers
Organization Country
document/leaflet/inf
ormation materials
available?
Description Format wished by members
Myeloma Euronet Romania RomaniaYes
Simplified info brochure - romanian language - paper and electronic format paper
Paws-Gist UK Yes English, linked to american clinic paper and electronicAnvolt (National Association Voluntary Against Cancer) Italy
/ / /
Gist Support UK UKYes
"Eating after gastectomy"; "What is GIST"; website paper and online
Italia Glioblastoma Multiforme Italy No / /
OHLB, 'Kraujas' LithuaniaYes
In the web-site: guide books on treatments, informational leaflets, educational slide-shows, only lithuanian language paper and electronic
Diagnoza CML Czech RepublicYes
Informative material in czech language. Paper, electronic and dvd format paper, website, dvd format
Asociatia Little People Romania RomaniaYes
2 publications: guide for parents; guide for psychosocial care providers; + An information website electronic
Lyle Patientforening for Lymfekraeft og Leukaemi Denmark
No /Internet, brochure from medical professional
Lymphoma Association UK
Yes11 english booklets and 70 information sheets covering all aspects of lymphoma. All our information and materials are available on our website and can be downloaded. paper and electronic
Document/Leaflet/information Materials Available
Information network on rare cancers
Document/Leaflet/information Materials Available
Kidney Cancer Association USAYes
“We Have Kidney Cancer,” available in 11 languages. in print, for the Kindle, and in PDF format Internet
brainstrust: the Meg Jones Brain Cancer Charity UK
Yes
In English – web based support materials and information with Dept of Health accreditation, practical tools such as our brainbox, and other books.
/
Stowarzyszenie Pomocy Chorym na GIST (GIST Patients’ Aid Association) Poland
Yes
Leaflet: “Diagnoza GIST? To nie jest koniec świata” (Are you diagnozed with GIST? It is not the end of the world). IInstruction how to cooperate with Clinical GIST Register. Paper format, in Polish. Basic information for the new diagnosed GIST patients. Paper
Waldenström’s Macroglobulinemia network (EWMnetwork) Netherland
Yes
Web site + EWMnetwork’s flyer is only available on paper in English language and describes the aims of the network. The flyer is meant as handout on workshops and congresses. Electronic
International Brain Tumour Alliance (IBTA) UK
Yes
The IBTA is a founding member of Cancer 52, the alliance of rare cancer organisations in the UK. As such our members (over 50 of them) have various types of support material available both in printed format and electronic format.
/
Nationwide Association of the CML Patients Aid Poland
Yes
A lot of information we present on the website of our Association and during the patients meeting we give them some materials
/
Lithuania Rare cancer patients advocacy group Lithuania
Yes
have a book about GIST tumors in patients with Lithuanian language, printed version. created a documentary film about our patients, we aim to reducing its social exclusion
/
Bulgarian Academy of Management of Pain, access to opioids and palliative care Esperanza Bulgaria
/ / /
Information network on rare cancers
Are you in contact with researchers association or medical professional associations for information?
Organization Countrycontact with
researchers/medicals association
Myeloma Euronet Romania Romania YesPaws-Gist UK Yes
Anvolt (National Association Voluntary Against Cancer) Italy
Yes
Gist Support UK UK YesItalia Glioblastoma MultiformeItaly Yes
OHLB, 'Kraujas' LithuaniaYes, at european level (EORTC, ESMO, EHA)
Diagnoza CML Czech Republic Yes
Asociatia Little People RomaniaRomania
Yes, Universities, National Society of paediatric Oncologists&Haematologists of Romania
Lyle Patientforening for Lymfekraeft og Leukaemi Denmark
Yes
Lymphoma Association UK
Yes. All publications either written or reviewed by medical experts. Medical Advisory Panel of 30 distinguished consultant haematologists and haemato-oncologists.
Information network on rare cancers
Kidney Cancer Association USA
Yes, We sponsor four international medical symposia
brainstrust: the Meg Jones Brain Cancer Charity UK
Yes
Stowarzyszenie Pomocy Chorym na GIST (GIST Patients’ Aid Association) Poland
Yes, Clinical GIST Register
Waldenström’s Macroglobulinemia network (EWMnetwork) Netherland
Yes, Medical Advisory Board with WM specialists from different European countries
International Brain Tumour Alliance (IBTA) UK
Yes
Nationwide Association of the CML Patients Aid Poland
Yes
Lithuania Rare cancer patients advocacy group Lithuania
Not enough
Bulgarian Academy of Management of Pain, access to opioids and palliative care Esperanza Bulgaria
Yes, Association of Innovative MedicineMedical University SofiaMedical University VarnaMedical University Pleven
Are you in contact with researchers association or medical professional associations for information?
Information network on rare cancers
M1: Analyse the patient information status quo before developing the informative toolkit and discuss with the project
Actions: Questions:
– Use existing information– Developing new material– Type of Languages that will be used – Getting feedback from patient organisations regarding the format of
the information that they would like to receive. Contacting our member organisations and asked partners the type
of information that they have Getting feedback from the partners in the Project
Information network on rare cancers
M2: Establish a patient network for rare cancer patients building on the already existing networks
Actions: Key Rare Cancer Advocates identified at the national level among ECPC
membership Existing Rare Cancer Action Group that will be expanded and developed to
cover: a) different rare cancers and b) different regions Asking Rare Cancer Advocates to recruit new patient advocates so as to
have a multiplier effect Expanding the database of patient advocates that would attend which would
be available to partners.
Information network on rare cancers
M3: Questionnaire and conduct the survey meant to identify the clinical centres of expertise
Questionnaire will be based on the criteria developed from WP5
Question will be about Criteria about CoE Good Response Rate - 80% In case of low response rate:
– Organize Focus Group Meetings– Phone Interviews
Information network on rare cancers
M4: Workshops
With Information Toolkit: Provide training workshops and encourage participants to use the toolkit with their members.
Ensure a high regional participation at these workshops.– To discuss Criteria of Committee of Expertise - Work Closely with
WP5 – To develop networks between patients and the partners of the
Project. – To learn and share between patient organisations from different
Member States and provide oppurtunity for partners in project to engage
– To discuss the transferability of these criteria between different Member States and within the regions
Information network on rare cancers
M5: Prepare 6 reports on the results of the workshops to train patients and discuss the results of the survey to identify centers of expertise
Action:– To disseminate the outcomes of the surveys and
compile a consensus report on feedback. Disseminate this to WP leaders for feedback.
– Communication Medium – ECPC website, FACE website, European Parliament, European Commission.
– Through Policy Platfforms such as the European Partnership for action Action Against Cancer.
Information network on rare cancers
Other deliverables of project will be disseminated by ECPC:
Organizing Meeting with MEPs
Policy Makers at the EU and National level
Conveying these points at the national level through our member organisations so highlighting outcomes
Information network on rare cancers
THANK YOU!
Prof Francesco De LorenzoVice President, ECPC
President, FAVO