Clinical trial NCT00746408: Tailored Internet Information Supply for Patients
Official title: Study of the Quality of Self-Diagnosis by Headache Patients Getting Tailored Internet Information
Study type: OBSERVATIONAL
Overall status: UNKNOWN
Conditions: Headache
Keywords: Internet
Information supply
Tailoring
Patient empowerment
Headaches
Consumer Health Information
Information Services
Information Storage and Retrieval
Information Systems
Lead sponsor: Health & Life Sciences University, Tryol
Sponsor class: OTHER
Collaborators: name: Bremen University of Applied Sciences
First posted: 2008-09-04
Enrollment: 500
Sex: ALL
Minimum age (years): 18
Maximum age (years): 75
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: yes
Observational model: CASE_CONTROL
Time perspective: CROSS_SECTIONAL
Sampling method: PROBABILITY_SAMPLE
Study population: All German speaking adults in the German-speaking part of Europe who suffer at least occasionally from headaches and have not been examined (concerning these headaches) by a physician yet.

* The population of the main study is narrowed down to a heterogeneous group of insurants of a health insurance company.
* The population of the online study is self-selecting.

Brief summary: Medical expert systems in combination with portal searching meta-search engines are exploited to provide reliable patient-tailored information. A prototype of a web-based information system has been developed and is to be evaluated. Its aim is to answer the decisive question whether expert system guided internet meta-search provides a better information supply for patients seeking health information online then this is possible by using ordinary search engines or health portals. The research does neither investigate the influence of ethical nor legal aspects of internet health information supply.


Eligibility criteria: Inclusion Criteria:

* Age between 18 and 75
* Suffers at least occasionally from headaches
* Has internet access
* Has not obtained a medical diagnosis (concerning this headache) by a physician, yet

Exclusion Criteria:

* Age under 18
* Age over 75
* Does never suffer from headaches
* Has no internet access
* Has already gotten a medical diagnosis for her/his headaches

Primary outcomes:
measure: Conformity of self-diagnosis and medical diagnosis
timeFrame: After medical diagnoses has been received
Secondary outcomes:
Other outcomes:
Locations:
city: Hall in Tyrol
country: Austria
facility: Health & Life Sciences University (UMIT)
state: Tyrol
Study officials:
affiliation: Health & Life Sciences University Tyrol, Austria
name: Wilfried Honekamp, MSc & Dipl.-Inform.
role: PRINCIPAL_INVESTIGATOR
affiliation: Health & Life Sciences University Tyrol, Austria
name: Herwig Ostermann, Dr.
role: STUDY_DIRECTOR
affiliation: Health & Life Sciences University Tyrol, Austria
name: Roland Staudinger, Prof.
role: STUDY_CHAIR
References:
citation: Eysenbach G, Powell J, Kuss O, Sa ER. Empirical studies assessing the quality of health information for consumers on the world wide web: a systematic review. JAMA. 2002 May 22-29;287(20):2691-700. doi: 10.1001/jama.287.20.2691.
citation: Andrew ME, Penzien DB, Rains JC, Knowlton GE, McAnulty RD. Development of a computer application for headache diagnosis: the Headache Diagnostic System. Int J Biomed Comput. 1992 Jul;31(1):17-24. doi: 10.1016/0020-7101(92)90050-3.
citation: Baur C, Deering MJ. Proposed frameworks to improve the quality of health web sites: review. MedGenMed. 2000 Sep 26;2(3):E35. No abstract available.
citation: Bessell TL, McDonald S, Silagy CA, Anderson JN, Hiller JE, Sansom LN. Do Internet interventions for consumers cause more harm than good? A systematic review. Health Expect. 2002 Mar;5(1):28-37. doi: 10.1046/j.1369-6513.2002.00156.x.
citation: Bindels R, Winkens RA, van Wersch JW, Pop P, Hasman A. Comparing assessment of appropriateness of diagnostic tests between a human expert and an automated reminder system. Stud Health Technol Inform. 2000;77:239-43.
citation: Birru MS, Monaco VM, Charles L, Drew H, Njie V, Bierria T, Detlefsen E, Steinman RA. Internet usage by low-literacy adults seeking health information: an observational analysis. J Med Internet Res. 2004 Sep 3;6(3):e25. doi: 10.2196/jmir.6.3.e25.
citation: Buchanan BG, Moore JD, Forsythe DE, Carenini G, Ohlsson S, Banks G. An intelligent interactive system for delivering individualized information to patients. Artif Intell Med. 1995 Apr;7(2):117-54. doi: 10.1016/0933-3657(94)00029-r.
citation: Bull FC, Kreuter MW, Scharff DP. Effects of tailored, personalized and general health messages on physical activity. Patient Educ Couns. 1999 Feb;36(2):181-92. doi: 10.1016/s0738-3991(98)00134-7.
citation: Eysenbach G, Kohler C, Yihune G, Lampe K, Cross P, Brickley D. A metadata vocabulary for self- and third-party labeling of health web-sites: Health Information Disclosure, Description and Evaluation Language (HIDDEL). Proc AMIA Symp. 2001:169-73.
citation: Gagliardi A, Jadad AR. Examination of instruments used to rate quality of health information on the internet: chronicle of a voyage with an unclear destination. BMJ. 2002 Mar 9;324(7337):569-73. doi: 10.1136/bmj.324.7337.569.
citation: Jadad AR, Gagliardi A. Rating health information on the Internet: navigating to knowledge or to Babel? JAMA. 1998 Feb 25;279(8):611-4. doi: 10.1001/jama.279.8.611.
citation: Kopec D, Shagas G, Selman J, Reinharth D, Tamang S. Development of an expert system for differentiating tension type headaches from migraines. Stud Health Technol Inform. 2004;103:81-92.
citation: Norman CD, Skinner HA. eHealth Literacy: Essential Skills for Consumer Health in a Networked World. J Med Internet Res. 2006 Jun 16;8(2):e9. doi: 10.2196/jmir.8.2.e9.
citation: Olesen J. The International Classification of Headache Disorders. Headache. 2008 May;48(5):691-3. doi: 10.1111/j.1526-4610.2008.01121.x.
citation: Olesen J. International Classification of Headache Disorders, Second Edition (ICHD-2): current status and future revisions. Cephalalgia. 2006 Dec;26(12):1409-10. doi: 10.1111/j.1468-2982.2006.01214.x. No abstract available.
citation: De Simone R, Coppola G, Ranieri A, Bussone G, Cortelli P, D'Amico D, d'Onofrio F, Manzoni GC, Marano E, Perini F, Torelli P, Beneduce L, Ciccarelli G, Mea E, Penza P, Ripa P, Sancisi E, Bonavita V. Validation of AIDA Cefalee, a computer-assisted diagnosis database for the management of headache patients. Neurol Sci. 2007 May;28 Suppl 2:S213-6. doi: 10.1007/s10072-007-0779-z.
citation: Walji M, Sagaram S, Sagaram D, Meric-Bernstam F, Johnson C, Mirza NQ, Bernstam EV. Efficacy of quality criteria to identify potentially harmful information: a cross-sectional survey of complementary and alternative medicine web sites. J Med Internet Res. 2004 Jun 29;6(2):e21. doi: 10.2196/jmir.6.2.e21.
citation: Wilkins ST, Navarro FH. Has the Web really empowered health care consumers? The truth is customers may not have changed as much as we think. Mark Health Serv. 2001 Fall;21(3):5-9.
citation: Winker MA, Flanagin A, Chi-Lum B, White J, Andrews K, Kennett RL, DeAngelis CD, Musacchio RA. Guidelines for medical and health information sites on the internet: principles governing AMA web sites. American Medical Association. JAMA. 2000 Mar 22-29;283(12):1600-6. doi: 10.1001/jama.283.12.1600.
citation: Woolf SH, Krist AH, Johnson RE, Wilson DB, Rothemich SF, Norman GJ, Devers KJ. A practice-sponsored Web site to help patients pursue healthy behaviors: an ACORN study. Ann Fam Med. 2006 Mar-Apr;4(2):148-52. doi: 10.1370/afm.522.