Abstract P1-10-01: Patient advocate involvement shapes UK’s first national breast cancer tissue bank - The breast cancer campaign tissue bank

Abstract

The Breast Cancer Campaign Tissue Bank (BCCTB) was initiated in 2010 after the charity Breast Cancer Campaign heard from breast cancer experts that insufficient high quality breast cancer tissue was preventing research which would impact people with breast cancer1. The charity decided to involve patient advocates in the development of the BCCTB from the beginning. Two advocates reviewed the initial applications to form the BCCTB. These included both single and multi-centre applications so they suggested that, rather than choosing one centre to form the Bank, the charity consider a collaboration of centres. Throughout the development of the BCCTB, the patient advocates asked the ‘elephant in the room’ questions and brought a different perspective. They also helped to design the Bank's processes, including the consent process and asking that all tissue applicants produce a lay summary of their research. There are now two advocates on the Board which provides strategic direction to the BCCTB. The advocates have equal status to other Board members. There are also three advocates on the Tissue Access Committee which controls the use of tissue in the Bank. Lay summaries of projects have to be approved by all advocates before an application can proceed. This means that no precious tissue is released without the approval of a lay person, who can ensure maximum patient benefit will be achieved from any research. The Bank's data return policy was also driven by the patient advocates who were keen that the tissues donated were used to their maximum benefit. This has resulted in the first publication from BCCTB2 Patient advocates have been involved in promoting the use of tissue from the bank presenting at conferences and at BCCTB road shows. Patient advocates have also been involved in asking potential donors to consent to donate to the tissue bank. The involvement of patient advocates in the development and oversight of the BCCTB has shown researchers that patient and public involvement works. The advocates can also help promote the Bank and the benefits of tissue donation to both professionals and lay groups. The patient advocates involved in the Breast Cancer Campaign Tissue Bank are members of the charity Independent Cancer Patients’ Voice 1. Thompson P, Brennan K, Cox A, Gee J, Harcourt D, Harris A, Harvie M, Holen I, Howell A, Nicholson R, Steel M, Streuli C. Evaluation of the current knowledge limitations in breast cancer research: a gap analysis. Breast Cancer Res 2008: 10(2); R26. 2. Speirs V, Morgan A. Investment biobanking – increased returns on tissue samples. Nat Rev Clin Onc 2013; 10:128-129. Citation Information: Cancer Res 2013;73(24 Suppl): Abstract nr P1-10-01.