G. Eysenbach (ey@yi.com)

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<ul><li> 1. G. Eysenbach (ey@yi.com) Universitt Heidelberg, Abteilung fr Klinische Sozialmedizin, Forschungsgruppe Cybermedizin Cybermedizin Gesundheitsfrderung via Internet Ethische Fragen an Kommunikationtechnologien Vernderung der Arzt-Patienten-Beziehung in der Informationsgesellschaft </li> <li> 2. Vortrag <ul><li>Cybermedizin </li></ul><ul><li>Patienteninformationssystem dermis.net </li></ul><ul><li>nderung der Arzt-Patienten-Beziehung im Internet-Zeitalter </li></ul><ul><li>Email-Kontakt zwischen Arzt und Patient </li></ul><ul><li>Qualitt von Internet-Information </li></ul><ul><li>med-CERTAIN EU Projekt </li></ul></li> <li> 3. Eysenbach G et al. BMJ 319: 1294 (13 Nov 1999) </li> <li> 4. Public Health Medical Informatics Medical / Health Education Telemedicine Clinical Medicine Diagnosis Therapy Internet Evidence- Based Medicine Cybermedicine Epidemiology Social Medicine Preventive Medicine Eysenbach G et al. BMJ 319: 1294 (13 Nov 1999) Cybermedicine is the science of applying Internet and global networking technologies to the area of medicine and public health, of studying the impact and implications of the Internet and of evaluating opportunities and the challenges for health care. </li> <li> 5. Eysenbach G et al. Towards the millennium of cybermedicine BMJ 319: 1294 (13 Nov 1999) Telemedicine vs. Cybermedicine </li> <li> 6. Unit for Cybermedicine at the Department of Clinical Social Medicine University of Heidelberg <ul><li>exploration and exploitation of the Internet for consumer health education, patient self-support, medical education and research </li></ul><ul><li>the evaluation of the quality of medical information on the Internet </li></ul><ul><li>studying the impact of the Internet on the patient-physician relationship and quality of health care </li></ul><ul><li>studying the use of global networking for evidence-based medicine. </li></ul></li> <li> 7. Unit for Cybermedicine at the Department of Clinical Social Medicine University of Heidelberg <ul><li>exploration and exploitation of the Internet for consumer health education, patient self-support, medical education and research </li></ul><ul><li>the evaluation of the quality of medical information on the Internet </li></ul><ul><li>studying the impact of the Internet on the patient-physician relationship and quality of health care </li></ul><ul><li>studying the use of global networking for evidence-based medicine. </li></ul></li> <li> 8. <ul><li>G. Eysenbach, J. Bauer, A. Sager, A. Bittorf, T.L. Diepgen </li></ul><ul><li>An international dermatological image atlas on the WWW: Practical use for undergraduate and continuing medical education, patient education and epidemiological research. </li></ul><ul><li>In: Cesnik B, McCray AT, Scherrer JR. Medinfo98 , Proceedings of the Ninth World Congress on Medical Informatics. </li></ul><ul><li>Amsterdam: IOS Press, 1998; pp. 788-792 </li></ul><ul><li>Diepgen TL, Eysenbach G. </li></ul><ul><li>Digital Images in Dermatology and the Dermatology Online Atlas on the World Wide Web. </li></ul><ul><li>J Dermatol 1998;25(12):782-7 </li></ul>Dermis.net - vertical health portal </li> <li> 9. Benutzersurvey <ul><li>HTML-Fragebogen auf der Website </li></ul><ul><li>Basis: ca. 1000 Benutzer </li></ul><ul><li>Cave: Self-Selection Bias </li></ul></li> <li> 10. Nutzerdaten dermis.net (Dermatologie Online Atlas) </li> <li> 11. </li> <li> 12. What are consumers looking for on the web? </li> <li> 13. Analyse der Patientenemails <ul><li>Eysenbach G, Diepgen TL: Patients Looking for Information on the Internet and Seeking Teleadvice: Motivation, Expectations, and Misconceptions as Expressed in E-mails Sent to Physicians. </li></ul><ul><li>Arch Dermatol 1999;135:151-156 </li></ul></li> <li> 14. </li> <li> 15. </li> <li> 16. Analyse der Patientenanfragen </li> <li> 17. Meist Patienten mit chronischen Erkrankungen </li> <li> 18. Frustrated patients <ul><li>I have gone to the dermatologist for more than 3 years to 3 different doctors and they have not a clue, one has said that I have follicultis and another prurigo.... </li></ul><ul><li>I have been to 4 doctors in the past 4 years (...) My last doctor gave me the worst advice. He wanted to give me a prescription that would eventually make me blind. </li></ul></li> <li> 19. Frustrierte Patienten </li> <li> 20. Cases of self-diagnosis 1+2 <ul><li>I recently discovered that from some of the descriptions Ive read that I may have symptoms of scabies. I was wondering if there is any known treatment for this disorder. If so, can you please forward any helpful information (...) </li></ul><ul><li>I would like what kind of things can I do to fight against psoriasis on fingers - because I saw the photo in your atlas and it seems to be the same. Thank you very much. </li></ul></li> <li> 21. Cases of self-treatment <ul><li>[from a 24 years old female under treatment for onycholysis, with a disease history of 18 years]: I took Sporonox for about 4 months. I was told that this had to cure my nails, but it did not work. At this time I have resigned from making any medication and I have turned to the Internet for some further investigation of my problem. </li></ul></li> <li> 22. Positive examples (1) <ul><li>[A female suspecting pityriasis rosea:] Have had this for approximately three years, and had not until this past year considered it to be a skin disorder. [After visiting the dermatological Internet atlas] I have made an appointment with a dermatologist (...) - is there anything I can do about this in the meantime? </li></ul></li> <li> 23. Positive examples (2) <ul><li>[a patient with dyshidrosis lamellosa:] ...my doctor told me that I have it and is trying to treat it, but I would like to help him by finding out more about it for myself. </li></ul></li> <li> 24. Warum nutzen Patienten das Internet? (1) <ul><li>Oft chronisch kranke Patienten.. </li></ul><ul><li>... oder unheilbar oder schwer erkrankte Patienten (oder deren Angehrige) </li></ul><ul><li>Frustration und Unzufriedenheit ber ausbleibende Behandlungserfolge </li></ul><ul><li>Das Gefhl zu haben, alles getan zu haben </li></ul><ul><li>Vertrauensverlust durch Rationierung im Gesundheitswesen </li></ul></li> <li> 25. Warum nutzen Patienten das Internet? (2) <ul><li>Mangelnde Aufklrung durch den Arzt (Zeitdruck) </li></ul><ul><li>Gestiegene Allgemeinbildung </li></ul></li> <li> 26. Information demand Internet Physicians Consumer power Consumer knowledge High consumer expectations Self-reliance Increased ethical and legal standards General education level Relative rise of chronic diseases Consumer dissatisfaction Exploding costs Increased access to information sources High-Tech medicine Less time Poor IT skills Market- oriented health system + - Self- support groups Consumer protection Preventive Medicine Patient Education Programs Information Overload mass media increase Reliance on physician </li> <li> 27. Patientinformationssystem </li> <li> 28. Teleprvention <ul><li>G. Eysenbach, T.L. Diepgen. Teleprevention and Teleepidemiology with the patient information system NeurodermIS on the World-Wide-Web. </li></ul><ul><li>In: Greiser E, Wischnewsky M (Hrsg.). Methoden der Medizinischen Informatik, Biometrie und Epidemiologie in der modernen Informationsgesellschaft. S. 251-253. Mnchen: MMW Medizin-Verlag, 1998 </li></ul></li> <li> 29. Patienteninformationssystem NeurodermIS <ul><li>patientengerechte Aufklrungstexte zum Thema Neurodermitis </li></ul><ul><li>ca. 50 HTML-Seiten mit 200 Abbildungen, teilweise aus dem Bildatlas </li></ul><ul><li>interaktiver Neurodermitis-Quiz und Atopie-Fragebogen </li></ul><ul><li>Datenspeicherung fr sptere Analysen, z.B. fr prventivmedizinische und epidemiologische Fragestellungen </li></ul></li> <li> 30. Patient Information on WWW e.g. about Atopic Eczema (Teleprevention) <ul><li>Electronic questionnaire: </li></ul><ul><li>disease diagnosed ? </li></ul><ul><li>risk factors/signs ? </li></ul><ul><li>calculates a-priori risk score </li></ul><ul><li>(e.g Atopy Score A [3,4]) </li></ul>Data analysis: Odds Ratios, New Scoring System (Atopy Score C) (Teleepidemiology) Database Refinement of Patient Information </li> <li> 31. Chancen der Patientenaufklrung via WWW <ul><li>Kombination massenmediale + individuumsorientierte Prvention </li></ul><ul><li>Interaktivitt, Intelligenz, Flexibilitt </li></ul><ul><li>Multimediaeinbindung </li></ul><ul><li>Bidirektionale Kommunikation: Mglichkeit zum direkten Feedback, Prototyping, iterative Entwicklung, Evaluation von Schulungsprogrammen, Tele-Epidemiologie </li></ul></li> <li> 32. Involvierung des Benutzers / Feedback-Level Anzahl der erreichten Benutzer niedrig hoch Sehr viele Sehr wenig <ul><li>Buch </li></ul><ul><li>Fernsehen </li></ul><ul><li>Radio </li></ul><ul><li>Seminar </li></ul><ul><li>Einzelgesprch </li></ul><ul><li>WWW (dynamisch) </li></ul><ul><li>Computerprogramme </li></ul><ul><li>WWW (statisch) </li></ul></li> <li> 33. Unit for Cybermedicine at the Department of Clinical Social Medicine University of Heidelberg <ul><li>exploration and exploitation of the Internet for consumer health education, patient self-support, medical education and research </li></ul><ul><li>the evaluation of the quality of medical information on the Internet </li></ul><ul><li>studying the impact of the Internet on the patient-physician relationship and quality of health care </li></ul><ul><li>studying the use of global networking for evidence-based medicine. </li></ul></li> <li> 34. Pioneering studies assessing the quality of... <ul><li>websites </li></ul><ul><li><ul><li>Impicciatore P et al. Reliability of health information for the public on the world wide web: systematic survey of advice on managing fever in children at home. BMJ 1997; 314: 1875-81 </li></ul></li></ul><ul><li>newsgroups </li></ul><ul><li><ul><li>Culver JD, Gerr F, Frumkin H. Medical Information on the Internet: a study of an electronic bulletin board. J Gen Intern Med . 1997; 12:466-70 </li></ul></li></ul></li> <li> 35. Pioneering studies assessing the quality of... <ul><li>interactive venues (email-advice) </li></ul><ul><li><ul><li>Eysenbach G, Diepgen TL Responses to Unsolicited Patient E-mail Requests for Medical Advice on the World Wide Web. JAMA 1998; 280:1333-1335 </li></ul></li></ul><ul><li><ul><li>Eysenbach G, Diepgen TL. Evaluation of Cyberdocs. Lancet 1998; 352 (9139): 1526 </li></ul></li></ul></li> <li> 36. Wie reagieren rzte auf Patientenanfragen? Eysenbach G, Diepgen TL: Responses to unsolicited patient e-mail requests for medical advice on the World Wide Web. JAMA 1998;280:1333-1335 </li> <li> 37. Our experiments and studies <ul><li>Analysis of responses to a pretended unsolicited patient email sent to 58 information providers </li></ul><ul><li>Questionnaire survey among 58 information providers on the WWW </li></ul></li> <li> 38. Methods (1) <ul><li>Finding email suitable email addresses </li></ul><ul><li><ul><li>Alta-Vista search for +blisters +skin +pain +dermatology, viewed 100 documents, found 12 information providers </li></ul></li></ul><ul><li><ul><li>list of WWW-addresses of academic dermatology departments worldwide, found 45 departments (http://tray.dermatology.uiowa.edu/AcadDept.html) . </li></ul></li></ul></li> <li> 39. Methods (2) <ul><li>58 email addresses </li></ul><ul><li><ul><li>4 dermatology organizations, 2 commercial sites, 2 universities, 1 dermatologist in free practice, 1 clinical psychologist specilized in skin diseases, 1 publisher, 1 hospital </li></ul></li></ul><ul><li><ul><li>depts from USA(22), Japan (8), Germany (7), Canada (2), UK (2), Spain (2), Austria, Brazil, Chile, Egypt, Finland, Hungary, Israel, Italy, Korea, New Zealand, Sweden, Switzerland, Singapore, Taiwan and Turkey (1 each). </li></ul></li></ul></li> <li> 40. Methods (3): Patient email Hello, I am a 55 years old male and have a sudden skin problem. During the last 4 days I had a little fever and headache. There was also a burning pain and tingling and extreme sensitivity in one area of the skin of the chest. Since yesterday suddenly multiple fluid filled painful red blisters appeared on the same skin area on the chest, on a broad streak of reddened skin. The skin eruptions are very painful and my wife says the groups of blisters look a lot like chickenpox, though they are only on that girdle-like skin area. I am on Sandimmune since I had a kidney-transplant some time ago. What is this? Is it dangerous? What is the therapy? Do I have to see a doctor? Please reply! Thank you very much, </li> <li> 41. Responses (1) n=58 </li> <li> 42. Responses (2): Contents </li> <li> 43. Responses (3): Treatment advice <ul><li>"Acyclovir or Famcyclovir" </li></ul><ul><li>"Valaciclovir" </li></ul><ul><li>"Aciclovir (per os or i.v.)" </li></ul><ul><li>"oral or I.V acyclovir for a couple days (...) In case acyclovir is obtainable as OTC drugs, you must consult your physician because acyclovir often affects the kidney.", </li></ul><ul><li>"within 5 days of disease, you may use Acyclovir 800 mg 5 times a day or Valtrex 500 mg 3 times a day for 5-7 days". </li></ul></li> <li> 44. Results summary <ul><li>29 (50%) responded to the pretended patient request </li></ul><ul><li>9 of the responders (31%) refused to answer without having seen the lesion </li></ul><ul><li>17 of the responders (59%) explicitly mentioned the "correct" diagnosis shingles in their reply </li></ul><ul><li>27 of the responders (93%) urged the imaginary patient to visit a doctor. </li></ul></li> <li> 45. Schlufolgerung <ul><li>Keine einheitlichen ethischen und juristischen Leitlinien zur Problematik, wie rzte mit Patientenanfragen per email umgehen sollen </li></ul></li> <li> 46. Evaluation von Cyberdocs Eysenbach G, Diepgen TL. Evaluation of Cyberdocs. Lancet 1998; 352 (9139): 1526 </li> <li>...</li></ul>