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

<p>Abstract</p> <p>Background</p> <p>The internet portal <url>http://www.brustkrebs-studien.de</url> (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.</p> <p>Methods</p> <p>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.</p> <p>Results</p> <p>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%).</p> <p>Conclusions</p> <p>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.</p

What have we learned? Themes from the literature on best-practice benchmarking

The aim of this paper is to review the important themes in the literature on benchmarking, and to assess the contribution to knowledge provided thus far. Four themes from the literature are highlighted: studies of the nature of benchmarking practice; criticisms of benchmarking; evaluating the effectiveness of benchmarking; and the notion of best practice. The authors argue that, while the literature does include a few critical analyses of the practice and impacts of benchmarking, it is dominated by relatively descriptive, and even prescriptive, accounts of the ‘realities’ of benchmarking. The longer-term qualitative and quantitative) effects and perspectives of diverse stakeholders on benchmarking are largely neglected. This selective focus has implications for the contribution of benchmarking research to practice, for example, in terms of the role of internal organizational capabilities in analysing the performance of processes and managing communications and change. The authors advocate areas of future research to improve theoretical understanding of benchmarking and thoroughly evaluate its impact within the context of performance management