BreastCancerTrials.org Empowers Patients to Find Trials
Breast cancer patients across the nation will soon have a way to match themselves with a clinical trial
• SAN ANTONIOBreast cancer patients across the nation will soon have a way to match themselves with a clinical trial, according to a pilot study reported at the 29th Annual San Antonio Breast Cancer Symposium (abstract 2049).
BreastCancerTrials.org (BCT) is a nonprofit, patient-centered clinical trial matching tool that was developed in collaboration with NCI, the University of California, San Francisco (UCSF) Comprehensive Cancer Center, the Center of Excellence for Breast Cancer Care, San Francisco, and patient advocates. It was launched in June 2005 as a pilot project for patients in the Bay Area, and the results were so encouraging that its developers plan to extend it nationwide.
Co-author Laura Esserman, MD, director of the UCSF Breast Care Center and professor of surgery and radiology at UCSF, said, "This shifts control of the clinical trials process to the patient. As we move this nationwide, I think it will have a huge impact on the rate at which patients enter trials. It makes patients think, 'I should be looking for a trial.'"
Features of BreastCancerTrials.org include a structured format of patient and trial data that enables matching; a trials alert service that informs the patient about newly opened trials by email; and privacy and security. The pilot program captured 52 trials, including protocols for adjuvant, neoadjuvant, and metastatic chemotherapy, hormonal therapy, and radiotherapy.
"BCT empowers breast cancer patients to find clinical trials themselves," said Ellyn J. Cohen, PhD, project manager, from UCSF Breast Care Center. "Patients self-report their breast cancer history online, using a variety of forms, and receive online help for questions. On the basis of their self-reported information, they receive summaries of appropriate trials and contact information for investigators. The patient then contacts the research site directly to determine eligibility, and, if accepted, she elects whether or not to enroll. . . . With this process, everything is transparent, there is no intermediary and no shifting of patients to a specific institution's trial."
High Usability in Pilot
A feasibility evaluation 14 months after the launch showed high acceptance and usability. A total of 733 patients registered with BCT, 614 accepted consent, 428 completed the patient's history record, 407 were matched to at least one trial, and 70 used the message center to invite research sites to view their breast cancer history, Dr. Cohen reported.
Usability rates have been high, especially considering that marketing was minimal, Dr. Cohen added. Patients learned of BCT via internet links or through their healthcare providers, support groups, family, friends and other patients. Users also clicked the "learn more" link 1,687 times, showing that patients want to know more about their cancer and their options.
In addition to matching patients with trials, the system has another benefit: It produces an online personal health record related to the patient's cancer. It can easily be upgraded, printed out, and shared with healthcare providers. Dr. Esserman remarked: "The internet has incredible power to change the way we organize our health care, for instance, empowering patients to have a personal health record and online support. I see a future where a lot of the work that physicians do will involve more personal relationships with our patients, and this is one way we are beginning to do this."
