The Brustkrebs-Studien.de website for breast cancer patients: User acceptance of a German internet portal offering information on the disease and treatment options, and a clinical trials matching service.
BACKGROUND
The internet portal http://www.brustkrebs-studien.de (BKS) was launched in 2000 by the German Society of Senology (DGS) and the Baden-Württemberg Institute for Women's Health (IFG) to provide expert-written information on breast cancer online and to encourage and facilitate the participation of breast cancer patients in clinical trials. We describe the development of BKS and its applications, and report on website statistics and user acceptance.


METHODS
Existing registries, including ClinicalTrials.gov, were analysed before we designed BKS, which combines a trial registry, a knowledge portal, and an online second opinion service. An advisory board guided the process. Log files and patient enquiries for trial participation and second opinions were analysed. A two-week user satisfaction survey was conducted online.


RESULTS
During 10/2005-06/2010, the portal attracted 702,655 visitors, generating 15,507,454 page views. By 06/2010, the website's active scientific community consisted of 189 investigators and physicians, and the registry covered 163 clinical trial protocols. In 2009, 143 patients requested trial enrolment and 119 sought second opinions or individual treatment advice from the expert panel. During the two-week survey in 2008, 5,702 BKS visitors submitted 507 evaluable questionnaires. Portal acceptance was high. Respondents trusted information correctness (80%), welcomed self-matching to clinical trials (79%) and planned to use the portal in the future (76%) and recommend it to others (81%).


CONCLUSIONS
BKS is an established and trusted breast cancer information platform offering up-to-date resources and protocols to the growing physician and patient community to encourage participation in clinical trials. Further studies are needed to assess potential increases in trial enrolment by eligibility matching services.
The Heidelberg Breast Centre, Department of Obstetrics and Gynaecology, Heidelberg University Hospital, Voßstr. 9, D-69115 Heidelberg, Germany. markus.wallwiener@googlemail.com
Markus
M
Wallwiener
Christian W
CW
Wallwiener
Sara Y
SY
Brucker
Andreas D
AD
Hartkopf
Tanja N
TN
Fehm
Julia K
JK
Kansy
D022126:Access to Information; D001943:Breast Neoplasms / Q000175:diagnosis / Q000523:psychology / Q000628:therapy*; D002986:Clinical Trials as Topic / Q000706:statistics & numerical data; D019317:Evidence-Based Medicine; D005260:Female; D005858:Germany; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D033181:Information Dissemination; D020407:Internet / Q000706:statistics & numerical data; D017060:Patient Satisfaction; D018579:Patient Selection; D012042:Registries; D011795:Surveys and Questionnaires; D035502:Trust