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The emergence of the e-patient

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"The emergence of the e-patient", held at 9th Annual Patient Summit 2012, London

"The emergence of the e-patient", held at 9th Annual Patient Summit 2012, London

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  • 1. 9th Annual Patient Summit 2012, London The emergence of the e-patient Jan GeisslerDirector, European Patients’ Academy on Therapeutic Innovation (EUPATI) Co-founder, Leukemia Patient Advocates Foundation & LeukaNET Secretary, European Forum For Good Clinical Practice (EFGCP) Member, EU Committee of Experts for Rare Diseases (EUCERD)
  • 2. The rollercoasterpatient journey Cancer puts patients & families on a rollercoaster ride Time is of essence Taking tough decisions quickly is difficult for the patient, family and caregiver
  • 3. What patients want to know1. Understand the disease2. Find the right doctor3. Find other patients4. Understand & consider trial participation5. Decide on therapy6. Understand interactions, adherence, CAM
  • 4. Rare Diseases: does the localdoctor really know best? Specialized doctor not available locally Late/incorrect diagnosis Lack of access Stigma and inequity
  • 5. "Informed Consent"? Healthcare systems do not incentivize detailed consultation: 12 minutes from door to door… Medical/legal language barrier §+ +
  • 6. 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)
  • 7. The myth of the…Google will stay.Bad information canonly be displaced bygood information,not by laws, codes - or bystaying away. Regulators and politicians still live the myth that a „walled garden“ can be created or maintained  Source: Sunbury Park, Sunbury-on-Thames
  • 8. Digital reality today: ALL patientsare accessing 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: ALL patients have access to online information • Elderly through their friends and relatives • Source: “EU EuroBarometer Report on Patient Involvement, May 2012”
  • 9. Through Social Media: Major(r)evolution of Patient AdvocacyInformation and support Grass-roots platforms on treatment, trials, side effect mgmtAdvocate & Campaign Only patients can truly represent their needs “Patient Unrest” in the crowdEnhance research Collaborate though the Internet: unique contribution to trials & priorities
  • 10. Example CML Advocates Network:global leukemia advocacy platform http://www.cmladvocates.netDrivers Public directory of CML groups Advocacy platform for patient advocates Capacity building, campaigns, cooperation Key enabler: Social MediaFounded 2007 as a grassroots network65 organisations in 52 countries
  • 11. Patients need innovation --and more transparencyParadigm shifts in Objective information &health research more transparency needed Molecular pathways Genome sequencing, Translational research Personalized medicine, orphanisation HTA (& QoL) Healthcare budgets vs drug pricing
  • 12. Patients orgs: key role in buildingnew R&D environment Patient organisations have unique insights in „real life“ and „real needs“ of patients: • Gap analysis in research priorities • Clinical trial design • Priority setting in healthcare budgets Driving force • Research policy Co-researcher Reviewer Training required to get expertise Advisor required to contribute to scientific projects Info provider Research subject Source: PatientPartner FP7 Project (2010)
  • 13. EUPATI: The paradigm shift ininvolving patients in medical R&D Great individual initiatives to train patient advocates, led by patient organisations, academia, industry Complemented by: The Patients’ Academy – a paradigm shift in collaborative efforts of all stakeholders to make drug development more effective in Europe
  • 14. EUPATI: European PatientsAcademy on Therapeutic Innovation develop and disseminate accessible, well-structured and user-friendly information and education on medicines R&D build expert capacity by training patient advocates create the leading public library on medicines R&D: 7 languages, “creative commons” license facilitate patient involvement in R&D to support industry, academia, authorities and ethics committees
  • 15. Training areas of EuropeanPatients’ Academy1. Medicines development process from research to approval2. Personalized and predictive medicine3. Drug safety and risk/benefit assessment of medicines4. Pharmaco-economics, health economics and HTA5. Design and objectives of clinical trials (& roles of stakeholders)6. Patients roles & responsibilities in medicines development
  • 16. Targeting advocacy leaders& public at large in 7 languages EUPATI Training Programme ( experts)  Academic Modular Certificate Programme 100  Patient Ambassadors. Patient patient Journalists, Patient Trainers advocates EUPATI Educational Toolbox ( education) 12.000  Tool box with a variety of distributable formats patient  Paper-based booklets, presentations, eLearning, webinars, videos etc. advocates EUPATI Internet Library ( information)  Wiki” “YouTube” Social Media” Internet 100.000 Sources (Editorial Board)  TV films and/or cartoons individuals
  • 17. Summary The „Walled Garden“ does not exist: A new generation of e-patients communicate, learn and manage their health Patients are key partners in providing key information and accelerating safer and more targeted research The European Patients’ Academy is the key pan-EU initiative to empower “patients in research”
  • 18. www.patientsacademy.eu Twitter: @eupatients as well as:Jan Geißler jan@patientsacademy.eu Twitter @jangeissler LinkedIn, Facebook, Twitter