Presentation at meeting of the European Commissions "Cancer Support Group" on 25 Sept 2012, reporting about the ECCO Oncopolicy Forum 2012 and why patients as partners matter in personalized medicine - by Jan Geissler (twitter @jangeissler)

1. ECCO Oncopolicy Forum 2012,
and why patients as partners
matter in personalized medicine
Jan Geissler
Member of the ECCO Patient Advisory Committee
Director, European Patients„ Academy on Therapeutic Innovation (EUPATI)
Co-founder Leukämie-Online e.V., CML Advocates Network, Leukemia Patient Advocates Foundation
Secretary, European Forum for Good Clinical Practice (EFGCP)
Member of EU Committee of Experts on Rare Diseases (EUCERD)
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2. The European Cancer Organisation
 Serving 60.000 oncology professionals
through 24 member organisations
 To transcend the various interests
in the oncology community
 To act as a coherent, impartial, inclusive and
collaborative force
 Proactively promoting and facilitating
multidisciplinarity
 Patient Advisory Committee (PAC)
helps ECCO to incorporate patients’
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3. • “The Future of
Personalised Cancer Medicine
in Europe”
• On 11 Oct, with perspectives from:
• ECCO (setting the scene)
• European Commission (EU Policy)
• Oncologists (latest advances in
molecular biology)
• Researchers (common standards in –omics)
• Clinicians (Uptake of PCM in daily practice)
• Economists (budgets, costs, reimbursement)
• Cooperative projects (EPAAC, DKFZ,
Rare Cancers Europe, EAPM)
3 • Patients (as partners in PCM)

4. Patients are excited about progress in tackling
cancer, but this also brings new challenges
“biological
Targeted
mechanics”
• Molecular targets/pathways Medicine
• Genome sequencing
• Translational research
“adapting
• Biomarker-based medicine Personalized
Medicine treatments to
• Small patient populations groups”
• HTA, QoL, endpoints, comparators
• Healthcare budgets vs drug pricing “multidisciplinary
Individualized
Medicine care for each
patient”
(incl drugs, surgery,
radiology, psycho-onc,
advocacy, health status,
mobility)
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5. There is no „magic bullet“
for most patients yet
• “Success stories” available only to
small numbers of cancers,
rare diseases, patients at “best age”
Source: RareCare (2012)
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6. Hope or hype:
Why patients need to be partners
• Multidisciplinary personalized cancer care
• Might only be available in Centers of Excellence
• Might only be applicable to patients that understand
• Patients need help to navigate their journey
• “Personalized treatment” may mean “more alone”
• Information about cancer and available options
• Access to their medical record and 2nd opinion
• Information about where to access quality cancer care
• Adhering to therapy – despite “complexity” of personalisation
• Enhancing research
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7. Patients can provide their expertise in research
on personalized cancer medicine
• Patients’ experience is complementary
to that of researchers.
• Examples
• Explain the value and risks of
Driving force
research in disease context
Co-researcher
• Improve (informed) consent Reviewer
• Make trial results widely known, Advisor
adoption
Information provider
• Provide insights in research design, Research subject
e.g. adherence, CAM use, QoL
PatientPartner
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• Make research happen FP7 Project (2010)

8. We need to be very sure what we„re promising…
• “Personalized cancer care”
• if applied right, will be a blessing
• should become more personalized and
multidisciplinary, not more exclusive
• requires informed, empowered patients
• EUPATI will build competencies
& expert capacity among patients
& public
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9. Thank you!
Jan Geißler
jan@patientsacademy.eu
Twitter @jangeissler
www.patientsacademy.eu
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