Background: In 1999, UCSF researchers and patient advocates began a collaboration to design BreastCancerTrials.org (BCT.org), a web-based clinical trial matching service. In May 2005, the UCSF Center of Excellence for Breast Cancer Care (COE) and NCI launched BCT.org as a 2-year pilot with the participation of 13 Bay Area research sites. The pilot showed that breast cancer patients were willing to use an online clinical trial matching service, that they were able to enter their detailed health history onto web-based forms, and that the system's underlying caMATCH technology led to valid matches. In a companion study to evaluate the accuracy of patient-entered data, UCSF researchers found a 93% match rate between the data UCSF patients entered in BCT.org and their corresponding clinic charts. As a result, the COE partnered with a non-profit corporation (Quantum Leap Healthcare Collaborative or QLHC) to launch a nationwide version of BCT.org in October 2008. Development: The COE and QLHC team upgraded BCT.org to include personalized questionnaires for different breast conditions; the ability to use BCT.org anonymously; and the development of more clearly presented trial information. To improve the quality of matching, the team developed TrialCODE, a caMATCH-compatible tool for coding and validating a wide range of eligibility criteria. In July 2009, BCT.org added a Trial Alert Service to inform users when newly listed trials match their history, and SecureCONNECT, a messaging platform that enables users to share their online health history with research sites. COE researchers defined metrics and configured Google Analytics to monitor user traffic and support quality improvement. Results: As of June 2010, the BCT.org trial registry had 331 coded trials, including 213 for treatment, 63 for psychosocial/support, and 55 distributed among diagnosis/screening, prevention, and other categories. The treatment trials were evenly divided between early and advanced disease and included additional trials for individuals with DCIS. In the 18 months between Jan. 2009 and June 2010, BCT.org received 25,206 visits with traffic increasing by 36% in the first 6 months of 2010 compared to the same period in 2009. Since its launch in July 2009, the Trial Alert Service (TAS) enrolled over 1,400 subscribers. As a result, the number of returning users increased from 1,335 to 4,007 in the 6-month period leading up to its launch, compared to the 6-month period after launch. Fifty research sites have registered to use SecureCONNECT and, with patient consent, can securely view BCT. org patient health histories. During the 18 month evaluation period, 3,563 BCT.org users started a health history with 2,206 (62%) completing it and matching to trials; among the users who matched to trials, 920 users (42%) clicked through to view a list of participating research sites. Conclusion: Thousands of patients have adopted BCT.org and use it to monitor trial opportunities. The registry of breast cancer trials is diverse and growing. The COE and QLHC are working to increase participation in SecureCONNECT and evaluate its impact on the efficiency of trial screening and enrollment. Citation Information: Cancer Res 2010;70(24 Suppl):Abstract nr P5-07-01.
Background: Less than 5% of adult cancer patients participate in trials, delaying the arrival of new therapies to the clinic. This is concerning for metastatic breast cancer patients, for whom there is no curative treatment. To facilitate metastatic patients' access to trials, BreastCancerTrials.org (BCT) partnered with five breast cancer advocacy groups to design and develop Metastatic Trial Search (MTS), a trial matching service based on BCT technology and embedded on their websites. Approach: BCT's partners include Breastcancer.org, Living Beyond Breast Cancer, Metastatic Breast Cancer Network, Triple Step Toward the Cure, and Young Survival Coalition. MTS was seamlessly integrated on each partner's website. To find trials, users submit data about their gender, age, location, menopausal status, cancer subtype, and sites with evidence of disease and in return receive a list of matching trials in BCT's patient-friendly format. MTS launched October 1, 2015. Results: Our evaluation included analysis of web traffic, an online user survey, two user focus groups, and partner interviews. MTS traffic between Oct. 2015 and May 2016 resulted in over 10,000 page views; peaks of activity correlated with social media posts. The user survey, conducted between Oct. 2015 and Jan. 2016, had 102 participants; 88% learned about MTS from our advocacy partners, mostly through email (52%) or social media (21%). Most participants (60%) cited learning about new breast cancer research as an important benefit of MTS. Sixty-three percent of users were looking for treatment trials, 16% contacted a research site and 12% spoke to their doctors about trials that they found on MTS. Among all respondents, 7% enrolled in a trial and 29% were still considering enrollment. Sixty percent of MTS users were satisfied with their experience, 33% were neutral, and 6% were dissatisfied; 65% would recommend MTS to a friend. To improve MTS, users ranked adding filters to narrow search results as the most pressing need. Providing a trial alert service was ranked second. Over 80% agreed with the statement: “MTS met an unmet need.” The focus groups were made up of 14 survey respondents who volunteered to participate. Discussants spoke highly about MTS' ease-of-use and its advocacy group endorsement. They also appreciated how MTS helped them learn about different ways to participate in research and provided information to share with their oncologists. According to many participants, one of the most important benefits of MTS was that it helped them “be prepared” if they needed to change treatment. Our advocacy partners were very satisfied with their involvement and all stated that “collaboration and sharing” were the most important outcomes. In addition, they viewed the consistency of seeing MTS on each of their sites as a benefit for patients looking to advocacy groups for trusted information. Conclusion: Our experience with MTS shows that advocacy groups working together can create an important channel for engaging patients in learning about metastatic breast cancer trials. Next steps will be to expand our advocacy network, make it easier for users to narrow search results, and offer ways for patients to learn about newly opened clinical trials. Citation Format: Cohen EJ, Colen SL, Dahlke DV, Esser M, Flowers L, Guglielmino JE, Jenkins M, Knackmuhs G, Lusen R, Mertz SA, Esserman LJ. Metastatic trial search: Advocacy groups collaborate to engage metastatic breast cancer patients in clinical trials [abstract]. In: Proceedings of the 2016 San Antonio Breast Cancer Symposium; 2016 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2017;77(4 Suppl):Abstract nr P2-14-01.
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