G. Eysenbach (ey@yi)

1. CybermedizinGesundheitsförderung via Internet Ethische Fragen an Kommunikationtechnologien Veränderung der Arzt-Patienten-Beziehung in der Informationsgesellschaft G. Eysenbach (ey@yi.com) Universität Heidelberg, Abteilung für Klinische Sozialmedizin, Forschungsgruppe Cybermedizin

2. Vortrag • Cybermedizin • Patienteninformationssystem dermis.net • Änderung der Arzt-Patienten-Beziehung im Internet-Zeitalter • Email-Kontakt zwischen Arzt und Patient • Qualität von Internet-Information • med-CERTAIN EU Projekt

3. Eysenbach G et al. BMJ 319: 1294 (13 Nov 1999)

4. Medical Informatics Internet Telemedicine Cybermedicine Epidemiology Clinical Medicine Public Health Evidence-BasedMedicine Preventive Medicine SocialMedicine Therapy Diagnosis Medical / Health Education 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.” Eysenbach G et al. BMJ 319: 1294 (13 Nov 1999)

5. Telemedicine vs. Cybermedicine Eysenbach G et al. Towards the millennium of cybermedicine BMJ 319: 1294 (13 Nov 1999)

6. ”Unit for Cybermedicine” at the Department of Clinical Social Medicine University of Heidelberg • exploration and exploitation of the Internet for consumer health education, patient self-support, medical education and research • the evaluation of the quality of medical information on the Internet • studying the impact of the Internet on the patient-physician relationship and quality of health care • studying the use of global networking for evidence-based medicine.

7. ”Unit for Cybermedicine” at the Department of Clinical Social Medicine University of Heidelberg • exploration and exploitation of the Internet for consumer health education, patient self-support, medical education and research • the evaluation of the quality of medical information on the Internet • studying the impact of the Internet on the patient-physician relationship and quality of health care • studying the use of global networking for evidence-based medicine.

8. Dermis.net - vertical health portal G. Eysenbach, J. Bauer, A. Sager, A. Bittorf, T.L. Diepgen An international dermatological image atlas on the WWW: Practical use for undergraduate and continuing medical education, patient education and epidemiological research. In: Cesnik B, McCray AT, Scherrer JR. Medinfo98, Proceedings of the Ninth World Congress on Medical Informatics. Amsterdam: IOS Press, 1998; pp. 788-792 Diepgen TL, Eysenbach G. Digital Images in Dermatology and the Dermatology Online Atlas on the World Wide Web. J Dermatol 1998;25(12):782-7

9. Benutzersurvey • HTML-Fragebogen auf der Website • Basis: ca. 1000 Benutzer • Cave: Self-Selection Bias

10. Nutzerdaten dermis.net (Dermatologie Online Atlas)

12. What are consumers looking for on the web?

13. Analyse der Patientenemails 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. Arch Dermatol 1999;135:151-156

16. Analyse der Patientenanfragen

17. Meist Patienten mit chronischen Erkrankungen

18. Frustrated patients • 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.... • 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.

19. “Frustrierte” Patienten

20. Cases of self-diagnosis 1+2 • I recently discovered that from some of the descriptions I’ve 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 (...) • 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.

21. Cases of self-treatment • [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.

22. Positive examples (1) • [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?

23. Positive examples (2) • [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.

24. Warum nutzen Patienten das Internet? (1) • Oft chronisch kranke Patienten.. • ... oder „unheilbar“ oder schwer erkrankte Patienten (oder deren Angehörige) • Frustration und Unzufriedenheit über ausbleibende Behandlungserfolge • Das Gefühl zu haben, „alles getan zu haben“ • Vertrauensverlust durch Rationierung im Gesundheitswesen

25. Warum nutzen Patienten das Internet? (2) • Mangelnde Aufklärung durch den Arzt (Zeitdruck) • Gestiegene Allgemeinbildung

26. „High-Tech“ medicine Consumerprotection Preventive Medicine Patient Education Programs Reliance on physician General education level High consumerexpectations Relative riseof chronic diseases Increased ethical and legal standards Explodingcosts Market- oriented health system Information Overload Increased access to information sources Consumer knowledge Consumer power Consumer dissatisfaction Less time Poor IT skills Self-supportgroups - + increase Information demand mass media Physicians Internet Self-reliance

27. Patientinformationssystem

28. Teleprävention G. Eysenbach, T.L. Diepgen. Teleprevention and Teleepidemiology with the patient information system NeurodermIS on the World-Wide-Web. In: Greiser E, Wischnewsky M (Hrsg.). Methoden der Medizinischen Informatik, Biometrie und Epidemiologie in der modernen Informationsgesellschaft. S. 251-253. München: MMW Medizin-Verlag, 1998

29. Patienteninformationssystem NeurodermIS • patientengerechte Aufklärungstexte zum Thema Neurodermitis • ca. 50 HTML-Seiten mit 200 Abbildungen, teilweise aus dem Bildatlas • interaktiver Neurodermitis-Quiz und Atopie-Fragebogen • Datenspeicherung für spätere Analysen, z.B. für präventivmedizinische und epidemiologische Fragestellungen

30. Patient Information on WWW e.g. about Atopic Eczema (Teleprevention) Refinement of Patient Information • Electronic questionnaire: • disease diagnosed ? • risk factors/signs ? • calculates a-priori risk score • (e.g Atopy Score A [3,4]) Database Data analysis: Odds Ratios, New Scoring System (Atopy Score C) (Teleepidemiology)

31. Chancen der Patientenaufklärung via WWW • Kombination massenmediale + individuumsorientierte Prävention • Interaktivität, Intelligenz, Flexibilität • Multimediaeinbindung • Bidirektionale Kommunikation: Möglichkeit zum direkten Feedback, Prototyping, iterative Entwicklung, Evaluation von Schulungsprogrammen, Tele-Epidemiologie

32. Sehr viele • Fernsehen Anzahl der erreichten Benutzer • WWW (dynamisch) • Radio • WWW (statisch) • Buch • Computerprogramme • Seminar Sehr wenig • Einzelgespräch niedrig hoch Involvierung des Benutzers / Feedback-Level

33. ”Unit for Cybermedicine” at the Department of Clinical Social Medicine University of Heidelberg • exploration and exploitation of the Internet for consumer health education, patient self-support, medical education and research • the evaluation of the quality of medical information on the Internet • studying the impact of the Internet on the patient-physician relationship and quality of health care • studying the use of global networking for evidence-based medicine.

34. Pioneering studies assessing the quality of... • websites • 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 • newsgroups • 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

35. Pioneering studies assessing the quality of... • interactive venues (email-advice) • Eysenbach G, Diepgen TL Responses to Unsolicited Patient E-mail Requests for Medical Advice on the World Wide Web. JAMA 1998; 280:1333-1335 • Eysenbach G, Diepgen TL. Evaluation of Cyberdocs. Lancet 1998; 352 (9139): 1526

36. Wie reagieren Ärzte 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

37. Our experiments and studies • Analysis of responses to a pretended unsolicited “patient” email sent to 58 information providers • Questionnaire survey among 58 information providers on the WWW

38. Methods (1) • Finding email suitable email addresses • Alta-Vista search for “+blisters +skin +pain +dermatology”, viewed 100 documents, found 12 information providers • list of WWW-addresses of academic dermatology departments worldwide, found 45 departments (http://tray.dermatology.uiowa.edu/AcadDept.html).

39. Methods (2) • 58 email addresses • 4 dermatology organizations, 2 commercial sites, 2 universities, 1 dermatologist in free practice, 1 clinical psychologist specilized in skin diseases, 1 publisher, 1 hospital • dept’s 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).

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,

41. Responses (1) n=58

42. Responses (2): Contents

43. Responses (3): Treatment advice • "Acyclovir or Famcyclovir" • "Valaciclovir" • "Aciclovir (per os or i.v.)" • "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.", • "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".

44. Results summary • 29 (50%) responded to the pretended patient request • 9 of the responders (31%) refused to answer without having seen the lesion • 17 of the responders (59%) explicitly mentioned the "correct" diagnosis shingles in their reply • 27 of the responders (93%) urged the imaginary patient to visit a doctor.

45. Schlußfolgerung • Keine einheitlichen ethischen und juristischen Leitlinien zur Problematik, wie Ärzte mit „Patientenanfragen per email“ umgehen sollen

46. Evaluation von Cyberdocs Eysenbach G, Diepgen TL. Evaluation of Cyberdocs. Lancet1998; 352 (9139): 1526

48. Evaluation of Cyberdocs • 10 free and 7 charging "cyberdocs" were identified • 10 cyberdocs responded • 3 refused to give advice because dermatology was not their area of expertise • 7 cyberdocs provided advice (2 for free, 5 for a charge) • Advice given by 5 "cyberdocs" was accurate and the "correct" diagnosis Herpes Zoster was mentioned • 2 questionable replies

49. Misinformation 1 • A self-described "well-known naturopathic doctor, lecturer, author and a general family practitioner" wrote in his email that "the fluid filled cysts are probably nothing to worry about" and recommended "the homeopathic medicine Apis 30D" and "vitamin C".

50. Misinformation 2 • "your eliminative organs may be congested (liver, spleen, gall bladder, kidneys, intestines, and skin). Make sure you get at least two good bowel movements a day. If you don't, have two apples and a warm glass of water immediately." His therapy advice was to "breath deeply (fresh air), drink plenty of rain water, or RO water, or distilled water", "getting some enzymes, which help allergies", "consider eliminating all dairy and wheat products" and to "get Red Clover and Dandelion" and "eat as many as you can".