Adoption, Acceptability, and Accuracy of an Online Clinical Trial Matching Website for Breast Cancer
Year: 2012
Type: article
Abstract: BACKGROUND: Less 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. OBJECTIVE: To assess adoption by research sites, acceptability to patients, and patients' accuracy in providing information to BreastCancerTrials.org. METHODS: We 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. RESULTS: A 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%). CONCLUSIONS: BreastCancerTrials.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.
DOI: 10.2196/jmir.1855
Language: English
Subfield: General Health Professions
Field: Health Professions
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $2,950
Funders: U.S. Department of Health and Human Services, California Breast Cancer Research Program, University of Southern California, Office of the National Coordinator for Health Information Technology, School of Medicine, Stanford University, University of California, San Francisco, National Cancer Institute, School of Medicine, University of California, San Francisco, Center for Biomedical Informatics and Information Technology, National Cancer Institute
OpenAlex ID: W2145682588