How Patient(Advocates)discuss ClinicalResearch on theInternetJan GeisslerEUPATICML Advocates NetworkLeukaemie-Online
Having cancer,access to information is crucial• Cancer patients need to take  informed decisions.  1.   Understand the dis...
Lack of information is a keyhealthcare problem• Miscommunication and  double effort• Suboptimal treatment• Lack of trial p...
"Informed Patients"?• Healthcare systems do  not incentivize detailed consultation:  12 minutes from door to door!• Non-me...
The myth of the walled garden:Google won‘t go awayBad information canonly be displaced bygood information,not by laws, cod...
Digital reality today: ALL patients areaccessing online information• 53 million Germans >14y are online,  – largest growth...
Strengthend by Social Media: Major(r)evolution of Patient AdvocacyInformation and support• Grass-roots platforms on  treat...
Example CML Advocates Network:global leukemia advocacy platformDrivers•   Public directory of leukemia groups•   Advocacy ...
Example Leukämie-Online:Vivid online patient community• Patient-driven, non-profit social media platform  launched in 2002...
Opportunities improving informedconsent• Patient-driven  optimization  of informed  consent• ToC, Glossary,  study flow ch...
Adverse event reporting:Example ACOR• Osteonecrosis of the Jaw (ONJ) reported in 2 studies of  Zometa (2003,2004)• ACOR My...
Patients sharing PRO and trial results:Fiction? No, reality. Also in Europe.• Find other patients with rare diseases with ...
Patients orgs: key role in buildingnew R&D environment• Patient organisations have unique  insights into „real life“ and „...
The Patients’ Academy: Paradigm shift inempowering patients on medicines R&D Launched Feb ’12, runs for 5 years,  29 cons...
Areas covered by EUPATI1. Medicines development process   from research to approval2. Personalized and predictive medicine...
Summary• The „Walled Garden“ does not exist:  Today’s e-patients communicate, learn and manage their  health – and discuss...
www.patientsacademy.eu                  Twitter: @eupatients                  as well as:Jan Geißler jan@patientsacademy....
DisclaimerThe views and opinions expressed in the following PowerPoint slides  are those of the individual presenter and s...
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Jan Geissler - How Patient (Advocates) discuss Clinical Research on the Internet

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"How Patient (Advocates) discuss Clinical Research on the Internet", presented by Jan Geissler (Twitter @jangeissler) at DIA Clinical Forum in The Hague on 9 Oct 2012.

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Jan Geissler - How Patient (Advocates) discuss Clinical Research on the Internet

  1. 1. How Patient(Advocates)discuss ClinicalResearch on theInternetJan GeisslerEUPATICML Advocates NetworkLeukaemie-Online
  2. 2. Having cancer,access to information is crucial• Cancer patients need to take informed decisions. 1. Understand the disease 2. Find the right doctor 3. Find other patients 4. Understand & consider trial participation 5. Decide on therapy 6. Know about interactions, adherence, CAM use, QoL
  3. 3. Lack of information is a keyhealthcare problem• Miscommunication and double effort• Suboptimal treatment• Lack of trial participation• Lack of adherence• Interactions with CAM (which every third cancer patient takes, Annals of Oncology. doi:10.1093/annonc/mdi110)
  4. 4. "Informed Patients"?• Healthcare systems do not incentivize detailed consultation: 12 minutes from door to door!• Non-medical/legal language barrier• Lack of information for patients with rare diseases §+ +
  5. 5. The myth of the walled garden:Google won‘t go awayBad information canonly be displaced bygood information,not by laws, codes - orby staying away.• Regulators and politicians still live the myth of a „walled garden“ Source: Sunbury Park, Sunbury-on-Thames
  6. 6. Digital reality today: ALL patients areaccessing online information• 53 million Germans >14y are online, – largest growth in 50+ group, – challenges in ethnic groups, low education, 70+ Source: “Initiative 21 (N)onliner-Atlas” (2010)• 15 EU countries: almost all patients have access to online information – Elderly through their friends and relatives – Source: “EU EuroBarometer Report on Patient Involvement, May 2012”
  7. 7. Strengthend by Social Media: Major(r)evolution of Patient AdvocacyInformation and support• Grass-roots platforms on treatment, trials, side effect managementAdvocate & Campaign• Only patients can truly represent their needs• “Patient Unrest” in the crowdEnhance research• Collaborate though the Internet: unique contribution to trials & priorities
  8. 8. Example CML Advocates Network:global leukemia advocacy platformDrivers• Public directory of leukemia groups• Advocacy platform for patient advocates http://www.cmladvocates.net• Capacity building, campaigns, cooperation, own research• Key enabler: Social MediaGrassroots network, founded 2007,today 66 patient organisationsin 53 countries
  9. 9. Example Leukämie-Online:Vivid online patient community• Patient-driven, non-profit social media platform launched in 2002 http://www.leukaemie-online.de• >900 news articles on news from clinical trials, research and disease management• >18.000 forum messages, discussing – living with leukemia – study results – new clinical trials – Side effect management
  10. 10. Opportunities improving informedconsent• Patient-driven optimization of informed consent• ToC, Glossary, study flow chart, terminology, videoEudraCT-Nr. 2010-024262-22, „TIGER“ Study in CML
  11. 11. Adverse event reporting:Example ACOR• Osteonecrosis of the Jaw (ONJ) reported in 2 studies of Zometa (2003,2004)• ACOR Myeloma group started telling members talking any bisphosphonates they should avoid any invasive procedure to the jaw - tooth extraction a common trigger• IMF used Myeloma list to conduct survey. 904 members responded in 30 days, captured data for diagnosis, treatments & complications• Results published at ASH, FDA ODAC & NEJM (Durie, Katz, Crowley; 07/07/05, p99) Source: Gilles Frydman, ECCO 2011
  12. 12. Patients sharing PRO and trial results:Fiction? No, reality. Also in Europe.• Find other patients with rare diseases with similar symptoms, side effects, trials• Track QoL, symptoms, side effects• “Dirty registry”
  13. 13. Patients orgs: key role in buildingnew R&D environment• Patient organisations have unique insights into „real life“ and „real needs“ – Gap analysis in research priorities Driving force Driving force – Clinical trial design Co-researcher Co-researcher – Priority setting in healthcare budgets Reviewer Reviewer – Research policy Advisor• Training of advocates required to get expertise required to contribute to Info provider scientific projects Research subject Source: PatientPartner FP7 Project (2010), http://www.patientpartner-europe.eu/
  14. 14. The Patients’ Academy: Paradigm shift inempowering patients on medicines R&D Launched Feb ’12, runs for 5 years, 29 consortium members, PPP of EU Commission and EFPIA will develop and disseminate objective, credible, correct and up-to-date public knowledge about medicines R&D will build competencies & expert capacity among patients & public will facilitate patient involvement in R&D to support academia, authorities, industry, ethics committees Source: EUPATI, www.patientsacademy.eu
  15. 15. Areas covered by EUPATI1. Medicines development process from research to approval2. Personalized and predictive medicine3. Drug safety and risk/benefit assessment of medicines4. Pharmaco-economics, health economics and health technology assessment5. Design and objectives of clinical trials (& roles of stakeholders) …and NOT: develop indication-6. Patients roles & responsibilities in or therapy-specific medicines development information!
  16. 16. Summary• The „Walled Garden“ does not exist: Today’s e-patients communicate, learn and manage their health – and discuss about clinical trials• The patient is the most underutilized resource of the healthcare system. Let Patients Help!• Patients are key partners in providing key information and accelerating safer and more targeted research• EUPATI - the key pan-EU initiative to empower “patients advocates in research”
  17. 17. www.patientsacademy.eu Twitter: @eupatients as well as:Jan Geißler jan@patientsacademy.eu Twitter @jangeissler
  18. 18. DisclaimerThe views and opinions expressed in the following PowerPoint slides are those of the individual presenter and should not be attributed to Drug Information Association, Inc. (“DIA”), its directors, officers, employees, volunteers, members, chapters, councils, Special Interest Area Communities or affiliates, or any organization with which the presenter is employed or affiliated.These PowerPoint slides are the intellectual property of the individual presenter and are protected under the copyright laws of the United States of America and other countries. Used by permission. All rights reserved. Drug Information Association, DIA and DIA logo are registered trademarks or trademarks of Drug Information Association Inc. All other trademarks are the property of their respective owners.

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