g. eysenbach ([email protected])

G. Eysenbach ([email protected])

Universität Heidelberg, Abteilung für Klinische Sozialmedizin, Forschungsgruppe Cybermedizin

Cybermedizin Gesundheitsförderung via Internet

Ethische Fragen an Kommunikationtechnologien

Veränderung der Arzt-Patienten-Beziehung in der Informationsgesellschaft

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

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

Public Health

Medical Informatics

Medical / Health Education

Telemedicine

Clinical Medicine

DiagnosisTherapy

Internet

Evidence-BasedMedicine

Cybermedicine

Epidemiology

SocialMedicine

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.”

Eysenbach G et al. Towards the millennium of cybermedicineBMJ 319: 1294 (13 Nov 1999)

Telemedicine vs. Cybermedicine

”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.

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

Dermis.net - vertical health portal

Benutzersurvey

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

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Specialist in private practice

Senior Physician - Consultant

Primary Care Physician - GP

Nurse

Non-medical scientist

Medical Student

Intern/Resident - TraineeDoctor

Hospital Specialist

Consumer/Patient

Nutzerdaten dermis.net (Dermatologie Online Atlas)

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

USA Germany Brazil Sweden UK

Specialist inprivate practice

Senior Physician -Consultant

Primary CarePhysician - GP

Nurse

Non-medicalscientist

Medical Student

Intern/Resident -Trainee Doctor

Hospital Specialist

Consumer/Patient

What are consumers looking for on the web?

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

Analyse der Patientenanfragen

has consulted one or more doctors

before56%

has not seen a doctor

5%

unknow n33%

not applicable6%

Meist Patienten mit chronischen Erkrankungen

Has obviously a long history of the disease

41%

Acute / one-time problem

10%

Unknow n43%

not applicable6%

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.

“Frustrierte” PatientenExplicitely expresses frustration/disappointment about previous

doctors17%

Requests second opinion w ithout

explicitely expressing frustration

23%

None of the above60%

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.

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.

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?

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.

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

Warum nutzen Patienten das Internet? (2)

Mangelnde Aufklärung durch den Arzt (Zeitdruck)

Gestiegene Allgemeinbildung

Information demand

InternetPhysicians

Consumerpower

Consumerknowledge

High consumer

expectations

Self-reliance

Increased ethical

and legal standards

General education

levelRelative riseof chronic diseases

Consumerdissatisfaction

Explodingcosts

Increasedaccess to

information sources

„High-Tech“ medicine

Less timePoor IT skills

Market-oriented

health system

+-Self-

supportgroups

Reliance on physician

Consumerprotection

Preventive Medicine

PatientEducationPrograms

InformationOverload

mass media

increase

Patientinformationssystem

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

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

Patient Information on WWWe.g. about Atopic Eczema

(Teleprevention)

Electronic questionnaire:• disease diagnosed ?• risk factors/signs ?calculates a-priori risk score(e.g Atopy Score A [3,4])

Data analysis:Odds Ratios,

New Scoring System (Atopy Score C)

(Teleepidemiology)

Database

Refinement of Patient

Information

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

Involvierung des Benutzers /Feedback-Level

Anzahl der erreichten

Benutzer

niedrig hoch

Sehr

vieleS

ehr w

enig

• Buch

• Fernsehen

• Radio

• Seminar

• Einzelgespräch

• WWW (dynamisch)

• Computerprogramme

• WWW (statisch)

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

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

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

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

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).

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).

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,

Responses (1)

non-responders50%

responded+made correct diagnosis

29%

responded+refused

16%

responded+helped w /o diagnosing

3%

responded+made w rong diagnosis

2%

n=58

Responses (2): Contents

31%

93%

63%

59%

45%

17%

31%

17%

0 5 10 15 20 25 30

REPLY

REFUSE

VISIT

DIAG MENTION

ZOSTER

DIAG CAUTION

CAUSES

COMPLIC

THERAPY

percentages given from those who replied (n=29)

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".

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.

Schlußfolgerung

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

Evaluation von Cyberdocs

Eysenbach G, Diepgen TL. Evaluation of Cyberdocs.

Lancet 1998; 352 (9139): 1526

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

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".

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".

Qualität von Internet-Information

Risiken: Qualität von Internet-Information

Keine redaktionelle/herausgeberische Kontrolle, jeder kann alles publizieren

Kein Kontext, Anbieter und Zielgruppe von Informationen oftmals unklar

Zunehmend dubiose Anbieter von Gesundheitsprodukten und Arzneimitteln aus dem Ausland

Verdeckte Pharmawerbung: Infomercials und Advertorials

1. Keine redaktionelle KontrolleBeispiel: Homepage von Dr. Hamer

“Krebs ist heilbar. (...) Das ontogenetische System der Tumoren, das von Hamer im Jahr 1987 gefunden wurde, ordnet sämtliche Krebs- und krebsäquivalente Erkrankungen nach Keimblattzugehörigkeit (...). Zu jedem dieser Keimblätter gehört, entwicklungsgeschichtlich bedingt ein spezieller Gehirnteil, eine bestimmte Art von Konflikt, sowie eine bestimmte histologische Zellformation im Organbereich. Das ontogenetische System der Mikroben nun ordnet die Mikroben den drei Keimblättern zu, wobei sich folgendes ergibt:

Die ältesten Mikroben, nämlich die Pilze und Pilzbakterien (Mykobakterien) sind für das Entoderm und für durch das Althirn gesteuerte Organe zuständig.

Die alten Mikroben (Bakterien) sind für das Mesoderm zuständig und für alle Organe, die aus dem Mesoderm gebildet wurden und durch das Kleinhirn und das Großhirn-Marklager gesteuert werden.

Die jungen Mikroben (Viren) sind ausschließlich für das Ektoderm und die von der Großhirnrinde (Cortex) gesteuerten Organe zuständig.”

[http://www.geocities.com/HotSprings/3374/]

2. Kein Kontext Anbieter? Zielgruppe? British Medical Journal (Vol. 213 Heft

7022 S.3): “The Internet’s challenge to health care provision: A free market in information will conflict with a controlled market in health care”.

3. Dubiose Anbieter

Qualität der Internet-Informationen entspricht oft nicht gültigen Richtlinien[Impicciatore et al. BMJ No 7098 Volume 314 Saturday 28 June 1997]

Shark-Cartilage, DHEA etc. [Bower, BMJ 17.8.96]

Schwere Zwischenfälle: “Poison on Line -- Acute Renal Failure Caused by Oil of Wormwood Purchased through the Internet” [Weisbord, NEJM 18.9.1997 -Vol 337, No 12]

Weitere Risiken “Gekauftes” Ranking bei Suchmaschinen Missverständnisse auf Seiten der Benutzer Selbstdiagnose Überstrapazierung der Informationsanbieter

durch Patientenanfragen

EU Projekt medCERTAIN(medPICS Certification and Rating of

Trustful and Assessed Health Information on the Net)

Eysenbach G, Diepgen TL: Towards quality management of medical information on the internet: evaluation, labelling, and filtering of information.

BMJ 1998;317:1496-1500

Eysenbach G, Diepgen TL: Labelling and filtering of medical information on the Internet. Meth Inf Med 1999;38:80-88

EU Projekt medCERTAIN(medPICS Certification and Rating of

Trustful and Assessed Health Information on the Net)

Förderung im Rahmen des EU „Action Plans for Safer Use of the Internet“ (IAP)

Projektkonsortium: – AKS Heidelberg (Co-ordinator)

– ILRT Bristol

– FinOHTA/STAKES

1 Mio DEM for 18 months Demonstrator for medPICS metainformation rating

and filtering system

Evaluation von Internet Information -Traditionell

ReviewingWebsite B

Medical website

Search engineUser

URL

Search

(1)

(2)

ReviewingWebsite A

(4)

(3)

© Eysenbach

Primum nil nocereWhere exactly lies the “quality” problem of

Internet information? lack of reliability

– complete lack of quality control at the stage of production

context deficit– no clear markers such as in traditional publishing allowing

patients to recognise a document immediately as intended for professionals

– anonymity (of authors)– internationality: "A free market of information will conflict with a

controlled market in health care" [Coiera E, BMJ 1996; 312: 3-4].

“Quality problem” on the Internet

... is a result of

lack of reliabilty: lack of quality control at the stage of information production

context deficit: the information not generally being associated with descriptive metainformation

Solution: Metainformation

Solution

lack of reliabilty evaluative metainformation (distributed by third parties)– today: badges/seals/logos distributed by the

authors ! context deficit

descriptive metainformation (distributed by third parties and/or authors)– today: meta-tags can only be included by authors

Evaluation von Internet Information

PICS=platform for internet content selection ursprünglich für Jugendschutz-Zwecke gedacht Struktur/Syntax für Metainformation um den Inhalt

einer Website zu beschreiben wert-neutral Metainformation kann durch den Autor eingegeben

werden (META-tags) oder durch Dritte http://medpics.org

Evaluation von Internet Information -Traditionell

ReviewingWebsite B

Medical website

Search engineUser

URL

Search

(1)

(2)

ReviewingWebsite A

(4)

(3)

© Eysenbach

Evaluation von Internet Information - mit medPICS

Label-Bureau B

Label-Bureau A

Rating ServiceMedical website

Search engineUser

Label B

Label A

Label AAuthors’Labels

URL

Search

(2)

(1)

(3)

(4)

© Eysenbach

Collaborative rating approach

Registered experts (medpics.org)

Label database

User

Medical website

Beyond peer-review:Indirect quality indicators

“Cybermetrics”: Web Citation Index (in analogy to the Science Citation Index) - http://webcite.net

Number of visitors (determined by an independent party)

User behavior and user demographics

• upstream-filtering

• manual downstream-filtering

• automatic downstream-filtering

How to select (filter) “meta-tagged” information?

Upstream-Filtering (Review-Services, “Quality-Seals”)

• centralistic approach• who judges the judges?• individual user needs?• enables misleading of

consumers• dynamics of the Internet?• newsgroups, emails...?

Manual Downstream-Filtering (Distribute quality criteria to consumers to enable own judgement)

• dynamics of the Internet no problem

• decentralized approach

• does not really help to find high-quality information in the first place

Automatic Downstream-Filtering (medPICS)

Filtering software

• user defines quality requirements, not a 3rd party

• decentralized approach• meta-information can

come from a 3rd party• meta-information

automatically distributed

“Labels”

data structure containing (meta)information about a given document's contents.

syntax of PICS-conform labels is described in the specification document “PICS Label Distribution Label Syntax and Communication Protocols”

Content labels in an HTML (META-tags) or in HTTP header stream

Content labels available separately: client can request labels from a so-called "label bureau"

In practice (1)

user loads the machine-readable rating system description (.rat) into his client software

from the electronic rating system description the client software generates a interface for the user to define certain quality requirements and/or to set their personal profile (for example stating that he is a “patient” living in the country “USA”)

In practice (2)

the user defines several label services and label bureaus he trusts in and he wants to be checked (e.g. FDA, WHO, HON...)

endusers software will now automatically check at that label bureau(s) before/during accessing any webpage

depending on what the labels say, the filter may block access to that URL or display a disclaimer

Rating vocabulary (1)

can be divided into:

Descriptive labels

Evaluative labels

Rating vocabulary: Descriptive

Subject codes (UMLS CUIs) Intended Audience Investigational vs. Approved Country Educational vs. Promotional Authors medical qualification Internal quality control Funding Products needing a prescription

Rating vocabulary: Evaluative

contents rating source rating distinction between original content and

advertising Authors' qualification stated Funding, conflict of interest stated

Scale (example)

4: contains serious wrong or misleading information known to be false as fact or omittences, with potentially dangerous consequences

3: contains some minor incorrectnesses or omittences without serious consequences

2: contains no obvious errors 1: excellent and up-to-date information, highly

recommended

medPICS rating system description

(category (transmit-as "med~a") (name "target-audience") (min 0) (max 7) (label-only true) (multivalue true) (integer false)

(label (name "kids") (description "Easy-to-understand material appropiate and intended for kids as patients") (value 1))

Example of medPICS label

<head> <META http-equiv="PICS-Label" content=' (PICS-1.1 " http://medpics.org" labels on "1997.11.05T08:15-0500" until "1998.12.31T23:59-0000" for "http://www.hepatitis-info.com" by "G.E." ratings (med~su 0019186 med~a 4:6 med~ay 2 med~t 4 med~e 3 med~q 2 med~r 2 med~f 1))

'> </head>

Take two in the morning and don’t ask questions

Holy land of the knowing

Hole of ignorance

No trespassing

Fig. 2a

physician patient

Let me educate* you

*(ex ducere =to lead out) Hole of ignorance

Holy land of the knowing

Fig. 2b

physician patient

No trespassing without professional guidance

WW

W

email

Self

-sup

port

No

tres

pass

ing

withou

t pro

fess

ional

guid

ance

Fig. 2c

physician patient

Welcome!

Watch your step

Internetpatient education

Fig. 2d

physician patient

Sinnvoll

Informationsrecherche für chronisch Kranke zu Alltagsfragen

Vernetzung mit Leidensgenossen in virtuellen Selbsthilfegruppen

Recherche nach neuen Forschungsergebnissen

Suche nach Experten (?)

Problematisch

Arzneimittelbestellung im Internet unter Umgehung eines Arztes

Stellungnahme zu diagnostischen Fragestellungen, insbesondere in der Abwesenheit einer vorbestehenden Arzt-Patientenbeziehung

Berufsordnung

§ 7 Behandlungsgrundsätze und Verhaltensregeln

– (...)

– Der Arzt darf individuelle ärztliche Behandlung, insbesondere auch Beratung, weder ausschließlich brieflich noch in Zeitungen oder Zeitschriften noch ausschließlich über Kommunikationsmedien oder Computerkommunikationsnetze durchführen.

Schweiz (Standesordnung FMH)

Art. 7 ”Die regelmässige Behandlung allein aufgrund schriftlich, telefonisch oder elektronisch übermittelter Auskünfte oder Berichte von Drittpersonen ist mit einer gewissenhaften Berufsausübung unvereinbar.

Use of the Internet for EBM Access to information for researchers (e.g.

for systematic reviews) Access to evidence-based information for

physicians Access to information for consumers

Projekte

Consumer involvement for priority setting for systematic reviews (Cochrane Skin Group)– Questionnaire posted at

http://dermis.net/cgi-bin/cochrane/question.htm

– database on consumer questions (doc-quest) „Narrative based medicine“ - Internet-based

database on individual patient experiences (i-DIPEX)

g. eysenbach ([email protected])

Health & Medicine