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The e-patient: empowered or overwhelmed? Patient's perspective on new technologies


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"The e-patient: empowered or overwhelmed? Patient's perspective on new technologies", presented by Jan Geissler at EFGCP Annual Conference 2013 on "Virtual Future: Ethical dimensions of emerging technologies in clinical trials and research" on 29 January 2013 in Brussels

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The e-patient: empowered or overwhelmed? Patient's perspective on new technologies

  1. 1. The e-patient:empowered or overwhelmed? Patients perspective on new technologies Jan Geissler EFGCP Annual Conference 2013Director, European Patients’ Academy on Therapeutic Innovation (EUPATI) Co-founder, Leukemia Patient Advocates Foundation & LeukaNET Secretary, European Forum For Good Clinical Practice (EFGCP)
  2. 2. The rollercoasterpatient journey Time is of essence Taking tough decisions quickly is difficult
  3. 3. Having a life-threatening disease,taking informed decisions is crucial1. Understand the disease2. Find the right doctor3. Find other patients4. Consider trial participation5. Decide on therapy6. Know about interactions, adherence, CAM use, QoL
  4. 4. "Informed Patient"? Healthcare systems do not incentivize consultation: 9.1 minutes from door to door… Medical/legal language barrier §+ +
  5. 5. Lack of information is a keyhealthcare problem Miscommunication and double effort Suboptimal treatment, lack of adherence Interactions with CAM Lack of trial participation
  6. 6. Only more transparency can overcomepublic scrutiny on research Only 6-12% of cancer patients ? participate in clinical studies 75% of all phase II-IV studies are delayed due to lack of recruitment Bad public image Delayed generation of data Slow progress Research  India, China
  7. 7. 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”
  8. 8. Strengthend by Social Media: Major(r)evolution of Patient AdvocacyInformation and support Grass-roots platforms on treatment, trials, PROAdvocate & Campaign Only patients can truly represent their needs “Patient Unrest” in the crowdEnhance research Collaborate though the Internet: unique contribution to trials & research priorities
  9. 9. Social Media is a doctors key source of health information as wellPhysicians online - % of content destinations when using the webSource: Comscore (2010)
  10. 10. Regulators & politicians still believe inthe myth of the walled garden Google will stay. Bad information can only be displaced by good information, not by laws, codes or warnings Sunbury Park, Sunbury-on-Thames
  11. 11. Doctors & patients:the importance of partnership Lets stop complaining. "Googled Health" is reality. • Theres nothing wrong in "I do not know. I need to find out." • Unblinding of randomized trials on the Internet was reality 10 years ago • Not finding a trial on Google will lead to scrutiny: "what is wrong?" Shared decision making & increased literacy will improve outcome & efficiency From the article "Be a Boss Babe: Why Your Doctor Disliking You is a Good Thing" by April Ricchuito
  12. 12. Adverse event reporting:Example ACOR lists 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
  13. 13. Patients sharing PRO and virtual trials:Fiction? No, reality. Today. Find other patients with rare diseases with similar symptoms, side effects, trials Track QoL, symptoms, side effects “Dirty registry” Soon in EU too!
  14. 14. Self-reported, patient-driven QoL dataaccelerating clinical discovery “the first real-time, real- world, open and non- blinded, patient-driven trial” …"Although observational studies using un-blinded data are not a substitute for double- blind randomized control trials, this study reached the same conclusion as subsequent randomized trials” …”Accelerating clinical discovery and evaluating the effectiveness of drugs already in use."
  15. 15. E-Patient: empowered, not overwhelmed! The „Medical walled Garden“ has been a myth for 10 years already. Today’s e-patients communicate, learn, manage their health – and discuss about clinical trials. "Roles are not only shifting but they are flipping around." Doctor-patient communication  partnership The empowered patient is the most underutilized resource of the healthcare system & more targeted research
  16. 16. Thank you!Jan Geisslerjan@patvocates.netTwitter @jangeissler