Open AccessAdoption, Acceptability, and Accuracy of an Online Clinical Trial Matching Website for Breast Cancer
Author(s) -
Ellyn Cohen,
Jeffrey Belkora,
J Tagliaferro Tyler,
J Schreiner,
Mary Jo Deering,
Lakshmi M Grama,
Brenda Duggan,
Julie Illi,
Julia Pederson,
Aprajita Anand,
Alexandra Teng,
Erin K McCreary,
Dan H. Moore,
Debasish Tripathy,
Michael Hogarth,
Morton A. Lieberman,
John Park,
Laura Esserman
Publication year - 2012
Publication title -
jmir. journal of medical internet research/journal of medical internet research
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.446
H-Index - 142
eISSN - 1439-4456
pISSN - 1438-8871
DOI - 10.2196/jmir.1855
Subject(s) - breast cancer , medicine , clinical trial , family medicine , medical history , cancer , medical record
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.