Tailored Internet Information Supply for Patients

Study of the Quality of Self-Diagnosis by Headache Patients Getting Tailored Internet Information

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.

Study Overview

• Status: Unknown
• Conditions: Headache
• Intervention / Treatment: Other: Expert system guided tailored information

• Study Type: Observational
• Enrollment (Anticipated): 500

Contacts and Locations

• Study Contact: Name: Wilfried Honekamp, MSc & Dipl.-Inform.; Phone Number: +49 (0) 178 1604553; Email: wilfried.honekamp@umit.at

Study Locations

• Austria
  • Tyrol
    • Hall in Tyrol, Tyrol, Austria, 6060
      • Recruiting
      • Health & Life Sciences University (UMIT)
      • Contact: Wilfried Honekamp, MSc & Dipl.-Inform.; Phone Number: +49 (0) 178 1604553; Email: wilfried.honekamp@umit.at
      • Principal Investigator: Wilfried Honekamp, MSc & Dipl.-Inform.

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 18 years to 75 years (Adult, Older Adult)
• Accepts Healthy Volunteers: No
• Genders Eligible for Study: All

• 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.

Description

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

Study Plan

How is the study designed?

Design Details

• Observational Models: Case-Control
• Time Perspectives: Cross-Sectional

Number of groups / cohorts

4

Cohorts and Interventions

Group / Cohort	Intervention / Treatment
Main 1; Insurants of the health insurance company BARMER using the prototype to receive expert system guided tailored internet information about the type of headache they suffer from.	Other: Expert system guided tailored information; The prototype is realised by a web-based information system. The HTML web-interface guides the user through the search process by querying the information demand. This is done by an integrated expert system. The expert system uses a rule based inference to determine an internal diagnosis. Based on this internal diagnosis the system searches quality labeled websites and presents relevant information to the user.
Main 2; Insurants of the health insurance company BARMER using search engines and portals to gather internet information about the type of headache they suffer from.
Online 1; Internet users using the prototype to receive expert system guided tailored internet information about the type of headache they suffer from.	Other: Expert system guided tailored information; The prototype is realised by a web-based information system. The HTML web-interface guides the user through the search process by querying the information demand. This is done by an integrated expert system. The expert system uses a rule based inference to determine an internal diagnosis. Based on this internal diagnosis the system searches quality labeled websites and presents relevant information to the user.
Online 2; Internet users using search engines and portals to gather internet information about the type of headache they suffer from.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Time Frame
Conformity of self-diagnosis and medical diagnosis	After medical diagnoses has been received

Collaborators and Investigators

• Sponsor: Health & Life Sciences University, Tryol
• Collaborators: Bremen University of Applied Sciences
• Investigators: Principal Investigator: Wilfried Honekamp, MSc & Dipl.-Inform., Health & Life Sciences University Tyrol, Austria; Study Director: Herwig Ostermann, Dr., Health & Life Sciences University Tyrol, Austria; Study Chair: Roland Staudinger, Prof., Health & Life Sciences University Tyrol, Austria

Publications and helpful links

General Publications

• 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.
• 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.
• 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.
• 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.
• 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.
• 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.
• 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.
• 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.
• 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.
• 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.
• 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.
• 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.
• 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.
• Olesen J. The International Classification of Headache Disorders. Headache. 2008 May;48(5):691-3. doi: 10.1111/j.1526-4610.2008.01121.x.
• 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.
• 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.
• 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.
• 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.
• 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.
• 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. Erratum In: Ann Fam Med. 2006 Jul-Aug;4(4):371.

Helpful Links

• The study website
• University of Applied Sciences Bremen, Germany

Study record dates

Study Major Dates

• Study Start: January 1, 2009
• Primary Completion (Anticipated): September 1, 2009
• Study Completion (Anticipated): September 1, 2009

Study Registration Dates

• First Submitted: September 2, 2008
• First Submitted That Met QC Criteria: September 3, 2008
• First Posted (Estimate): September 4, 2008

Study Record Updates

• Last Update Posted (Estimate): June 16, 2009
• Last Update Submitted That Met QC Criteria: June 15, 2009
• Last Verified: June 1, 2009

More Information

Terms related to this study

• Keywords: Patient empowerment; Internet; Headaches; Information supply; Tailoring; Consumer Health Information; Information Services; Information Storage and Retrieval; Information Systems
• Additional Relevant MeSH Terms: Pain; Neurologic Manifestations; Headache
• Other Study ID Numbers: GW Diss 3000490