ECPC European Cancer Patient Coalition achievements in cancer policy and research and ELLOK activities in same advocacy areas

1. The Pursuit for Precision Healthcare
Patient needs in personalized healthcare
Kathi Apostolidis
Vice President ECPC-European Cancer Patient Coalition
President - Hellenic Cancer Federation – ELL.O.K.
Η Ερευνα στην Υπηρεσία της Δημόσιας Υγείας – ΓΓΕΤ – Υπουργείο Υγείας – 20 Ιουνίου 2018 – Εθνικό Ιδρυμα Ερευνών

2. Meet ELL.O.K.-Hellenic Cancer Federation
- Advocates to improve cancer & health
care policy
- 31 member organizations
- Cover all cancers, common & rare
- Collaboration & partnership with
national οncological scientific
societies
- ELL.O.K. & its members are members
of ECPC & other European cancer
organizations

3. European Cancer Patient Coalition
ECPC
Largest European
cancer patients' umbrella organisation
+430 organisations in 46 countries

4. ECPC: cancer patients’ recognised voice
▪ European Commission
• Joint Action on Cancer Control – CanCon
• Joint Action on Rare Cancers - JARC
• European Commission’s Expert Group on Cancer Control
• European Commission Initiative on Breast Cancer-Quality Assurance
Scheme Development Group (ECIBC/QASDG)
• Working Group on mHealth guidelines assessment
▪ European Medicines Agency
• Patients’ and Consumers’ Working Party
• ΕΝCePP -European Network of Centres for Pharmacoepidemiology and
Pharmacovigilance

5. KEY PARTNERSHIPS OF ECPC

6. Research activity
• Two IMI projects
• Four Horizon2020 projects
• One FP7 project
• Nutrition in cancer

7. What is the Problem with Current Cancer Care?
▪ Cancer is a complex, heterogeneous
disease
▪ All patients treated the same way: one
size fits all
▪ Treatments not tailored to the patient
▪ High toxicity, low response rate, high
costs
▪ Treatments offered in clinical settings:
patients resent travels for treatment

8. Principle of Personalized Healthcare:
Identify the right patients for the right drug

9. What is the state of
cancer biomarkers in
Europe?
Only 23% of European Doctors felt that their patients were always
fully informed about biomarker testing
Days waiting for results from molecular testing

10. ECPC Commitment to improve cancer patients’
treatment outcomes: Biomarkers Survey 2016

12. What does Personalized Healthcare offer?
▪ Cost and Quality
Personalized healthcare can help us predict the right therapy
with the fewest side effects for individual patients. It can
improve the quality of care and decrease cost at the same
time.
▪ Patient involvement in their care
Educating patients about their disease and treatment and using
easy online sharing of information can help them better take
prescriptions as instructed

13. How Personalized Health Care can impact health
Source: Quebec Network for
Personalized Health Care
(QNPHC)

14. Joint Action on Cancer Control - CanCon
Genomics provide new strategies for personalised medicine within a public health
perspective, known as “public health genomics”, which align with the novelty in
particular in oncology.
Policymakers, health authorities and other public bodies need to inform and engage
support resources to enable citizens, individually and cooperatively, to
▪ Access, understand, interpret and utilize reliable information that supports
personalised healthcare;
▪ Define metrics to measure stakeholder participation, particularly among citizens
and their communities
▪ Facilitate public dialogue on the value of personalized medicine and the necessary
conditions for its success.
▪ Establish a framework on the ethical, legal and social requirements related to
introducing the use of omics data into the health system. I
▪ Increase genetic and preventive literacy of healthcare professionals and citizens
to promote responsible use of these novel options.

15. Source: Quebec Network for
Personalized Health Care
(QNPHC)

16. The Value of Innovation in Oncology
1. Patients should be routinely involved decision making processes with regulators,
academia & industry in the development of innovative cancer treatments;
2. There should be a centralised, relative effectiveness assessment that is valid in all EU
Member States & takes into account patient-reported outcomes;
3. There should be a stronger enforcement of the existing access framework for Member
States, i.e. to take the decision of setting a price and reimbursement of a medicine
within 180-days from the EMA authorisation and to communicate transparently the
criteria;
4. Member States should invest in innovative radiotherapy equipment and workforce
training to help overcome inequalities in access to radiation oncology;
5. The focus of development of innovative surgical techniques should be to improve long-
term survival and the quality of life;
6. Innovative eHealth and mHealth tools should be used in parallel with innovative care
pathways, to increase patient-centricity by design and by default, and should be subject
to solid, visible and transparent assessment and governance by an EU-level monitoring
body.
7. The performance of standardised cancer patient pathways should be carefully
monitored, and strategies to ensure that the pathways are should be included into
national cancer plans.

17. info@ecpc.org,
info@ellok.org
@cancereu @EllokGr
@kgapo
European Cancer Patient Coalition(ECPC)
Hellenic Cancer Federation-ELLOK
Thank you