Adoption, acceptability, and accuracy of an online clinical trial matching website for breast cancer

Ellyn Cohen, Jeff Belkora, Joanne Tyler, Joan Schreiner, Mary Jo Deering, Lakshmi Grama, Brenda Duggan, Julie Illi, Julia Pederson, Aprajita Anand, Alexandra Teng, Erin McCreary, Dan Moore, Debu Tripathy, Michael Hogarth, Morton Lieberman, John Park, Laura Esserman

Research output: Contribution to journalArticle

7 Citations (Scopus)

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.

Original languageEnglish (US)
JournalJournal of Medical Internet Research
Volume14
Issue number4
DOIs
StatePublished - Jul 2012

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Clinical Trials
Breast Neoplasms
Health
Research
Medical Records
Neoplasms
Therapeutics
Parturition
Hormones
Surveys and Questionnaires

Keywords

  • Breast cancer
  • Cancer information
  • Clinical trials

ASJC Scopus subject areas

  • Health Informatics

Cite this

Cohen, E., Belkora, J., Tyler, J., Schreiner, J., Deering, M. J., Grama, L., ... Esserman, L. (2012). Adoption, acceptability, and accuracy of an online clinical trial matching website for breast cancer. Journal of Medical Internet Research, 14(4). https://doi.org/10.2196/jmir.1855

Adoption, acceptability, and accuracy of an online clinical trial matching website for breast cancer. / Cohen, Ellyn; Belkora, Jeff; Tyler, Joanne; Schreiner, Joan; Deering, Mary Jo; Grama, Lakshmi; Duggan, Brenda; Illi, Julie; Pederson, Julia; Anand, Aprajita; Teng, Alexandra; McCreary, Erin; Moore, Dan; Tripathy, Debu; Hogarth, Michael; Lieberman, Morton; Park, John; Esserman, Laura.

In: Journal of Medical Internet Research, Vol. 14, No. 4, 07.2012.

Research output: Contribution to journalArticle

Cohen, E, Belkora, J, Tyler, J, Schreiner, J, Deering, MJ, Grama, L, Duggan, B, Illi, J, Pederson, J, Anand, A, Teng, A, McCreary, E, Moore, D, Tripathy, D, Hogarth, M, Lieberman, M, Park, J & Esserman, L 2012, 'Adoption, acceptability, and accuracy of an online clinical trial matching website for breast cancer', Journal of Medical Internet Research, vol. 14, no. 4. https://doi.org/10.2196/jmir.1855
Cohen, Ellyn ; Belkora, Jeff ; Tyler, Joanne ; Schreiner, Joan ; Deering, Mary Jo ; Grama, Lakshmi ; Duggan, Brenda ; Illi, Julie ; Pederson, Julia ; Anand, Aprajita ; Teng, Alexandra ; McCreary, Erin ; Moore, Dan ; Tripathy, Debu ; Hogarth, Michael ; Lieberman, Morton ; Park, John ; Esserman, Laura. / Adoption, acceptability, and accuracy of an online clinical trial matching website for breast cancer. In: Journal of Medical Internet Research. 2012 ; Vol. 14, No. 4.
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