Abstract
BackgroundThe 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.MethodsExisting 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.ResultsDuring 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%).ConclusionsBKS 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.
Highlights
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 expertwritten information on breast cancer online and to encourage and facilitate the participation of breast cancer patients in clinical trials
Development of the BKS website Design of the BKS platform Existing breast cancer trial registries such as ClincialTrials.gov (maintained by the National Cancer Institute (NCI)), BreastCancerTrials.org, OncoLink.org and a German clinical trials registry maintained by the German Cancer Society, Studien.de, were reviewed and analysed [13,14,15,16]
All features were compared, evaluated and prioritized. These were reviewed by an advisory board of breast cancer experts from the German Society of Senology (DGS) and patient support and advocacy organizations to assist with the development process
Summary
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 expertwritten information on breast cancer online and to encourage and facilitate the participation of breast cancer patients in clinical trials. Growing numbers of clinical trials are include lack of interest [3,5], low acceptance of the study treatment, concerns about work-related problems, travel and long treatment periods [6,7]. Physicians fail to recruit patients due to reservations about clinical trials and negative referral policies at certain centres, and their patients’ comorbidities, mental state and disabilities [8,9]. 40-50% of cancer patients already resort to the Internet for healthcare information, and this number is likely to increase dramatically over the few years [4]. As a result of “patient empowerment”, patients have come to expect access to reliable, high quality, patient-centred information on their medical condition and all available treatment options
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