Abstract P3-15-01: Patients and Researchers Together (PART); a patient-centered tumor tissue collection PARTnership between patients and researchers to increase tissue donations for breast cancer research
Authors: Spears Patricia A. , Branch Vernal , Potter Jennifer A. , Van Lokeren Missy , Babadi Nasrin H. , Beltran Adriana S. , Betts Laurie , Crespo Coleen , Dean Barbara , Garrett Amy L. , Jensen Laura T. , Johnson Gary L. , Morris Hayley , Spanheimer Philip , Perou Charles M. , Carey Lisa A. , Earp H. Shelton 
Published: March 2022

Introduction: Translational research is essential to the success of every cancer center. Increasingly doctors ask patients to donate tissue to study all aspects of the disease to improve cancer treatments and quality of life. Patients are key stakeholders and partners in the success of the translational research process. The University of North Carolina (UNC), Lineberger Comprehensive Cancer Center (LCCC) researchers would like to increase the number of patients that donate tissue to support research and value patients who donate. Securing the right tissues at the right time, and processing and storing them properly is essential for research that leads to breakthrough discoveries. Purpose: LCCC supports the inclusion of patient advocates in all cancer center research. Therefore, the UNC Breast SPORE patient advocates initiated a program called Patients and Researchers Together (PART) to ensure patients work closely with researchers to drive the best research forward. The PART-Tissue program aims to develop a process to increase the donation and usage of patient donated tissues. This program is built on significant patient engagement that leads to a bi-directional patient and researcher PARTnership. We believe patients will be more willing to donate tissue if they are informed about the research process, understand the impact research has to improve patient’s lives, and are valued as PARTners of LCCC. Objectives: The first objective is to promote the excellence of LCCC translational research to all stakeholders, including patients and the community. Second; create a patient-centered tissue donation program that will meet researcher needs across LCCC, and Third; ensure the tissue collection process is primarily focused on recognizing patient’s voluntary contributions while minimizing patient burden. Methods: We first created a multi-stakeholder committee to ensure the participation of key stakeholders in all activities. We developed a process to identify relevant materials to assist in tissue donation at LCCC. The project focused on a Lineberger breast cancer tissue collection protocol (LCCC9819). We discussed patient, researcher and clinician/surgeon needs that reflect the vision of the PART program. We identified the need for several types of informational materials for patients, developed them with multi-stakeholder involvement and evaluated their accuracy, readability, understandability, and health literacy. We assessed the current and future needs of LCCC researchers by conducting interviews and surveys. We also engaged patient advocates as PARTners throughout this project. Results: We initiated the PART-Tissue program in August 2020 and we have engaged multiple stakeholders throughout the project. We evaluated LCCC9819 from the patient, research and clinical perspectives. We identified a series of informational materials needed for patients to introduce them to the value of tissue donation and to introduce them to the LCCC9819 protocol. We developed two introductory materials and a study summary. We conducted interviews and developed a survey to collect information about researcher needs at LCCC. In pilot interviews, we noticed a high need for fresh tissue, which requires real-time coordination between clinicians, clinical research coordinators, surgeons, pathologists and researchers. We also developed a website to connect directly with patients and the community about the importance of tissue donation that can lead to discoveries in cancer risk reduction and treatment. The goal is to develop a process where patients feel encouraged to donate tissue samples and are appreciated as partners with researchers who use the tissue to improve the lives of cancer patients.

Citation Format: Patricia A. Spears, Vernal Branch, Jennifer A. Potter, Missy Van Lokeren, Nasrin H. Babadi, Adriana S. Beltran, Laurie Betts, Coleen Crespo, Barbara Dean, Amy L. Garrett, Laura T. Jensen, Gary L. Johnson, Hayley Morris, Philip Spanheimer, Charles M. Perou, Lisa A. Carey, H. Shelton Earp. Patients and Researchers Together (PART); a patient-centered tumor tissue collection PARTnership between patients and researchers to increase tissue donations for breast cancer research [abstract]. In: Proceedings of the 2021 San Antonio Breast Cancer Symposium; 2021 Dec 7-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2022;82(4 Suppl):Abstract nr P3-15-01.