Collecting tissue for research purposes: A survey of 16 institutions in the Translational Breast Cancer Research Consortium (TBCRC).

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10615 Background: In order to understand the pathogenesis of breast cancer, many institutions are routinely requesting patients to donate tissue for current or future research. However, little is known about established processes for collecting tissue specimens for research studies. Methods: The Patient Advocate Working Group of the TBCRC, a collaborative group of 16 US academic breast cancer programs, conducted a two-part study to learn how patients are approached for tissue/biospecimen banking in its sites. Advocates from each institution contacted the appropriate person at each site to complete the surveys, explain their purposes, and ensure completion of the 2 online surveys (40 questions). Questions covered current practices, identified best practices, and recommended areas of improvement. One survey focused on the processes and staff involved in obtaining consent, the other focused on the information obtained from the consent form. Results: 16 invitations to respond were sent out and 12 sites completed the surveys. In all, a median of 80% (range, 20-100%) of patients were approached to obtain consent for tissue/biospecimen banking with an average patient refusal rate of 20%. 40% of the institutions limited the number of times a patient could be approached for consent and 20% of the institutions reported an annual goal for obtaining consents. 1 institution offered courses on interviewing skills, cultural or sensitivity training. The entire consent form was reviewed with patients about 80% of the time over an average of 20 minutes (range, 5-60). Only 1 TBCRC institution collected data from patients on their experience with consenting. Consent form differences included length (2-13 pages), permission for future contact (70%), permission to draw blood (65%) and donation of tissue without linkage to clinical data (43%). Conclusions: Development of patient educational materials on biospecimen donation, specialized training for staff, and a systematic approach to obtaining patient feedback may lead to a better patient experience and possibly a higher consent rate. Simplified consent forms that provide patients with necessary information for informed decision-making are needed.

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