ECCO Oncopolicy Forum 2012,          and why patients as partners         matter in personalized medicine                 ...
The European Cancer Organisation        Serving 60.000 oncology professionals         through 24 member organisations    ...
• “The Future of      Personalised Cancer Medicine      in Europe”    • On 11 Oct, with perspectives from:       • ECCO (s...
Patients are excited about progress in tackling    cancer, but this also brings new challenges                            ...
There is no „magic bullet“    for most patients yet    • “Success stories” available only to      small numbers of cancers...
Hope or hype:    Why patients need to be partners    • Multidisciplinary personalized cancer care      • Might only be ava...
Patients can provide their expertise in research    on personalized cancer medicine    • Patients’ experience is complemen...
We need to be very sure what we„re promising…    • “Personalized cancer care”      • if applied right, will be a blessing ...
Thank you!    Jan Geißler    jan@patientsacademy.eu    Twitter @jangeissler    www.patientsacademy.eu9
Upcoming SlideShare
Loading in …5
×

ECCO Oncopolicy Forum - and why patients as partners matter in personalized medicine - Jan Geissler

880 views

Published on

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)

Published in: Health & Medicine
0 Comments
0 Likes
Statistics
Notes
  • Be the first to comment

  • Be the first to like this

No Downloads
Views
Total views
880
On SlideShare
0
From Embeds
0
Number of Embeds
1
Actions
Shares
0
Downloads
0
Comments
0
Likes
0
Embeds 0
No embeds

No notes for slide

ECCO Oncopolicy Forum - and why patients as partners matter in personalized medicine - Jan Geissler

  1. 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)1
  2. 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’2
  3. 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. 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)4
  5. 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)5
  6. 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 research6
  7. 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 PatientPartner7 • Make research happen FP7 Project (2010)
  8. 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 88
  9. 9. Thank you! Jan Geißler jan@patientsacademy.eu Twitter @jangeissler www.patientsacademy.eu9

×