Adoption, Acceptability, and Accuracy of an Online Clinical Trial Matching Website for Breast Cancer

Abstract

BackgroundLess than 5% of breast cancer patients participate in clinical trials. To increase patients’ awareness and access to trials, we created BreastCancerTrials.org, a clinical trial matching website. BreastCancerTrials.org matched patients to trials based on their self-reported breast cancer history. It also provided a messaging platform through which patients could self-refer themselves to participating research sites.ObjectiveTo assess adoption by research sites, acceptability to patients, and patients’ accuracy in providing information to BreastCancerTrials.org.MethodsWe approached 13 research sites in Northern California to list their trials on BreastCancerTrials.org. For adoption, we examined the willingness of contacted research sites to collaborate with BreastCancerTrials.org. For acceptability, we analyzed usage statistics of visitors who completed the BreastCancerTrials.org health history questionnaire in the first 14 months after launch and surveyed users who visited the website during its first year about their experience. For accuracy, we compared the self-reported health history of 20 patients against their medical records. The health history questionnaire was divided into four sections: About Me, personal information including date of birth and sex; My Health as of Today, current status including cancer stage, menopausal status, and sites with evidence of disease; My Cancer, diagnostic information such as hormone and human epidermal growth factor receptor 2 status; and My Treatment, an itemized record of past treatment including responses to therapy.ResultsA total of 12 sites contributed 55 trials. Regarding acceptability, 733 visitors registered on the website; 428 reported their health history; and 407 matched to at least one trial. Of 375 patients who were sent a survey, 75 responded (20%); 23 of the 75 (31%) contacted a research site, 12 of the 23 (52%) were eligible for a trial, and 5 of the 12 (42%) reported enrolling. As for accuracy, 20 clinic visitors reported 1456 health history items, 1324 of which matched their clinic record (90.93%).ConclusionsBreastCancerTrials.org was adopted by research sites. Patients found it acceptable and were able to provide accurate information for trial matching. Based on our findings, we launched an upgraded version of BreastCancerTrials.org as a national service in October 2008.

Educating Low-SES and LEP Survivors About Breast Cancer Research: Pilot Test of the Health Research Engagement Intervention

“…Inspired by patient advocates, BCT was initially launched in 2005 as a San Francisco research pilot [17], and then launched nationwide in 2008, listing only studies that have been registered in ClinicalTrials.gov BCT has attracted primarily highly educated White users, and thus recognized the need to make substantial changes to communicate with a diverse audience, including LEP and low-literacy breast cancer patients and survivors. BCT partnered with Shanti and UCSF researchers on the present study to enhance the site's ability to share its information with underserved breast cancer patients and survivors and their navigators.…”

“…In contrast, our study utilized paid staff navigators at a community-based organization, Shanti Project (Shanti), to provide general education about the spectrum of breast cancer research in a neutral manner not tied to enrollment in a specific trial. We also collaborated with BreastCancerTrials.org (BCT), a nonprofit clinical trials matching service, to develop tailored up-to-date information about participation opportunities [17]. …”

‘Being there’ for women with metastatic breast cancer: a pan-European patient survey

“…Historically, only 5% of women with breast cancer are enroled into clinical trials (Cohen et al , 2012), with lack of knowledge or adequate information being one of the foremost obstacles to participation (Simon et al , 2004). In the United Kingdom, which has a well-developed National Cancer Research Network, over 2011 to 2012, only 10% of incidence cases of all breast cancer were enroled into a randomised controlled trial.…”

Identification and Validation of Targets for Cancer Immunotherapy: From the Bench-to-Bedside

“…Cohen et al [127] have created an online website called BreastCancerTrials.org which matches patients to current trials taking place depending on the information they provide. This provides a valuable source for cancer patients who may want initial guidance on which clinical trials may be beneficial to them.…”