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  Patient advocacy groups  in rare cancers Jan Geissler Co-founder, CML Advocates Network Chair, LeukaNET Founder, Patvoca...
About the  CML Advocates Network <ul><li>Global network of leukemia patient groups </li></ul><ul><li>Founded in 2007  </li...
Time is often of essence in the  rollercoaster patient journey <ul><li>After diagnosis, time is of essence in cancer </li>...
Patients with rare cancers  face specific challenges <ul><li>Prevention/screening  mostly not relevant </li></ul><ul><li>L...
Rare diseases and rare cancers  – is there a difference? <ul><li>Rare Cancers are often lost between common cancers and ra...
Different categories of rare cancer advocacy groups <ul><li>Internet-based communities </li></ul><ul><ul><li>Information d...
Patient advocacy groups  operate on three levels <ul><li>Support & inform patients </li></ul><ul><li>Influence Health Poli...
Role #1  Patient Information and Support
Having cancer,  access to information is crucial <ul><li>Cancer patients need to  take  informed decisions. </li></ul><ul>...
Patients and patient advocates need access on different levels <ul><li>Patient information is a fundamental right to enabl...
Centralized, quality-assured info  portals: do they meet the needs? <ul><li>There are ~278 clinically different cancers:  ...
Role #2  Influencing  the political agenda
Patients can induce change in healthcare, esp. in rare cancers <ul><li>Patients are the only true representatives of patie...
Role #3  Patients' participation in (rare) cancer research
Patients – as co-researchers? <ul><li>&quot; More needs to be done: rare cancers will never be a priority unless the patie...
Patients have a complementary expertise that is invaluable to research <ul><li>Patients experience is complementary, not s...
Where can patient groups  contribute to cancer research? <ul><li>Before research starts </li></ul><ul><ul><li>Identificati...
<ul><li>Support & inform </li></ul><ul><li>on the cancer rollercoaster </li></ul><ul><li>Advocate </li></ul><ul><li>Only p...
Thank you! <ul><li>Jan Geissler </li></ul><ul><li>[email_address] </li></ul><ul><li>Twitter @jangeissler </li></ul><ul><li...
Internationally  operating Rare Cancer Advocacy Organisations <ul><li>International Brain Tumour Alliance (IBTA) -  http:/...
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Rare Solid Cancers: An Introduction - Slide 5 - J. Geissler - Patient advocacy groups in rare cancers

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Rare Solid Cancers: An Introduction - Slide 5 - J. Geissler - Patient advocacy groups in rare cancers

  1. 1. Patient advocacy groups in rare cancers Jan Geissler Co-founder, CML Advocates Network Chair, LeukaNET Founder, Patvocates http://www.cmladvocates.net
  2. 2. About the CML Advocates Network <ul><li>Global network of leukemia patient groups </li></ul><ul><li>Founded in 2007 </li></ul><ul><li>Main objectives </li></ul><ul><li>Provide public directory of CML groups </li></ul><ul><li>Facilitate communication of CML advocates </li></ul><ul><li>Build and grow advocacy knowledge </li></ul><ul><li>Membership </li></ul><ul><li>55 CML patient groups from 46 countries on all continents </li></ul>
  3. 3. Time is often of essence in the rollercoaster patient journey <ul><li>After diagnosis, time is of essence in cancer </li></ul><ul><li>Taking tough decisions quickly is difficult for the patient, family and caregiver </li></ul>
  4. 4. Patients with rare cancers face specific challenges <ul><li>Prevention/screening mostly not relevant </li></ul><ul><li>Late or incorrect diagnosis common in many rare cancers </li></ul><ul><li>Experienced doctor not available locally </li></ul><ul><li>Lack of access to appropriate therapies and clinical expertise </li></ul><ul><li>Slowness of research (lack of clinical trials & commercial interest), </li></ul><ul><li>Facing stigma and inequity - lack of public understanding </li></ul><ul><li>Lack of interest in funding rare cancer patient groups </li></ul>
  5. 5. Rare diseases and rare cancers – is there a difference? <ul><li>Rare Cancers are often lost between common cancers and rare diseases </li></ul><ul><li>Unite, not divide </li></ul>261 RARE CANCERS 6000-8000 Rare Diseases Cancers
  6. 6. Different categories of rare cancer advocacy groups <ul><li>Internet-based communities </li></ul><ul><ul><li>Information dissemination </li></ul></ul><ul><ul><li>Often grassroots initiatives </li></ul></ul><ul><li>(Networks of) local support groups Disseminating information, individual sharing </li></ul><ul><li>International umbrella groups and networks </li></ul>
  7. 7. Patient advocacy groups operate on three levels <ul><li>Support & inform patients </li></ul><ul><li>Influence Health Policy </li></ul><ul><li>Collaborate in Research </li></ul>
  8. 8. Role #1 Patient Information and Support
  9. 9. Having cancer, access to information is crucial <ul><li>Cancer patients need to take informed decisions. </li></ul><ul><ul><li>Understand the disease </li></ul></ul><ul><ul><li>Find the right doctor </li></ul></ul><ul><ul><li>Find other patients </li></ul></ul><ul><ul><li>Understand & consider trial participation </li></ul></ul><ul><ul><li>Decide on therapy </li></ul></ul><ul><ul><li>Know about interactions, adherence, complementary medicine </li></ul></ul>
  10. 10. Patients and patient advocates need access on different levels <ul><li>Patient information is a fundamental right to enable joint, informed decision making </li></ul><ul><li>Levels of knowledge, literacy and language are different – there is no &quot;one size fits all&quot; patient information </li></ul><ul><li>Patients need support to understand what they heard , and to prioritize questions to the doctor </li></ul>
  11. 11. Centralized, quality-assured info portals: do they meet the needs? <ul><li>There are ~278 clinically different cancers: 17 &quot;common&quot; and 261 &quot;rare&quot; (  RARECARE 2010) </li></ul><ul><li>Centralized, approved info portals often fail to meet the needs on rare cancers: budgets exhausted after the &quot;top 17&quot; </li></ul><ul><li>Patient advocacy groups (websites, printed info) play a major role in patient information </li></ul><ul><li>Civil society engagement is a key part of the healthcare, but often not acknowledged </li></ul>
  12. 12. Role #2 Influencing the political agenda
  13. 13. Patients can induce change in healthcare, esp. in rare cancers <ul><li>Patients are the only true representatives of patients - not doctors, not industry, not consumer groups </li></ul><ul><li>Patients can identify real needs, protection levels, priorities </li></ul><ul><li>Some topics: </li></ul><ul><ul><li>Access to diagnostics and therapies </li></ul></ul><ul><ul><li>Trial safety & ethics </li></ul></ul><ul><ul><li>&quot;Information to patients&quot; policy </li></ul></ul><ul><li>Striking a balance of trust and public pressure </li></ul>
  14. 14. Role #3 Patients' participation in (rare) cancer research
  15. 15. Patients – as co-researchers? <ul><li>&quot; More needs to be done: rare cancers will never be a priority unless the patients make it one. Patients themselves must therefore play a larger role in driving forward the search for therapies. They are able to see connections that have eluded scientists.&quot; </li></ul>
  16. 16. Patients have a complementary expertise that is invaluable to research <ul><li>Patients experience is complementary, not substitutive </li></ul><ul><li>Examples </li></ul><ul><ul><li>What it means to live with the cancer </li></ul></ul><ul><ul><li>Explain the value and barriers of participation in cancer trials, improve informed consent </li></ul></ul><ul><ul><li>Make trial results widely known  medical practice </li></ul></ul><ul><ul><li>Provide insight on adherence, CAM use, QoL </li></ul></ul><ul><ul><li>Fundraise to make research happen </li></ul></ul>
  17. 17. Where can patient groups contribute to cancer research? <ul><li>Before research starts </li></ul><ul><ul><li>Identification of indications, therapy options, patient population, gaps </li></ul></ul><ul><ul><li>Uncovering ethical and risk/benefit dilemmas, incl biomarkers </li></ul></ul><ul><ul><li>Defining patient-oriented outcome measures (PFS, OS) </li></ul></ul><ul><li>While research is done </li></ul><ul><ul><li>Managing of expectations: hope or hype </li></ul></ul><ul><ul><li>Patient recruitment and compliance </li></ul></ul><ul><ul><li>Side effect monitoring </li></ul></ul><ul><ul><li>Patient & public confidence in clinical research </li></ul></ul><ul><li>After conclusion of research </li></ul><ul><ul><li>Quality of life monitoring </li></ul></ul><ul><ul><li>Improving compliance </li></ul></ul><ul><ul><li>Assessment of value, cost-effectiveness </li></ul></ul>Reviewer Co-researcher Driving force <ul><ul><li>Source: PatientPartner FP7 Project (2010) </li></ul></ul>Research subject Informat. provider Advisor
  18. 18. <ul><li>Support & inform </li></ul><ul><li>on the cancer rollercoaster </li></ul><ul><li>Advocate </li></ul><ul><li>Only patients can truly represent their needs </li></ul><ul><li>Enhance research </li></ul><ul><li>Groups can provide a unique contribution </li></ul>Rare cancer patient organisations as true partners!
  19. 19. Thank you! <ul><li>Jan Geissler </li></ul><ul><li>[email_address] </li></ul><ul><li>Twitter @jangeissler </li></ul><ul><li>http://www.cmladvocates.net </li></ul>
  20. 20. Internationally operating Rare Cancer Advocacy Organisations <ul><li>International Brain Tumour Alliance (IBTA) - http://www.theibta.org </li></ul><ul><li>Sarcoma Patients Euronet (SPAEN) - http://www.sarcoma-patients.eu </li></ul><ul><li>CML Advocates Network - http://www.cmladvocates.net </li></ul><ul><li>International Kidney Cancer Coalition (IKCC) - http://www.ikcc.org </li></ul><ul><li>European Cancer Patient Coalition (ECPC) – http://www.ecpc-online.org </li></ul><ul><li>European Rare Disease Organisation (EURORDIS) - http://www.eurordis.org </li></ul><ul><li>European Waldenström Network (EWMNetwork) - http://www.ewmnetwork.eu/ </li></ul><ul><li>European Myeloma Platform (EMP) - http://www.emp-myeloma.eu </li></ul><ul><li>Myeloma Euronet - http://www.myeloma-euronet.org </li></ul><ul><li>Lymphoma Coalition - http://www.lymphomacoalition.org </li></ul><ul><li>Myelodysplastic Syndromes Foundation - www.mds-foundation.org </li></ul><ul><li>Carcinoid & Neuroendocrine Tumor Society - http://www.cnets.org </li></ul><ul><li>International Confederation Of Childhood Cancer Parent Organizations (ICCCPO) - http://icccpo.org/ </li></ul><ul><li>… </li></ul>

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