December 06, 2018
The University of Kansas Cancer Center and its outreach network, the Midwest Cancer Alliance, hosted an introductory training workshop earlier this month for individuals who wanted to learn more about KU Cancer Center’s patient research advocacy program. Patient and Investigator Voices Organizing Together, called PIVOT for short, is an initiative that aims to bring greater community and patient engagement to all aspects of KU Cancer Center’s research efforts. The purpose of the workshop was to inform the community about patient research advocacy and recruit new PIVOT members.
According to Sara Douglas, MSN, RN, OCN, PIVOT program manager, only a few National Cancer Institute (NCI)-designated cancer centers have similar programs that include a balance of diversity of cancer types and stages, ranging from those at high risk due to genetic disposition or family history, to those with metastatic cancer.
“PIVOT is an evolving community of patients, families and caregivers learning and working with researchers throughout KU Cancer Center’s research decision-making process,” said PIVOT member Cheryl Jernigan. “Since its founding in 2016, our members have been engaging in meaningful partnerships, shared understanding and ongoing communications with cancer researchers.”
More than 40 individuals participated in the workshop. Presenters included KU Cancer Center Director Roy Jensen, MD, Jennifer Klemp, PhD, co-leader of KU Cancer Center’s Cancer Prevention and Survivorship research program, and Danny Welch, PhD, breast cancer researcher and associate director of Education at KU Cancer Center.
The curriculum covered the basics of cancer research as well as the role of a patient advocate. It also emphasized that research extends beyond clinical trials. KU Cancer Center researchers conduct research in the lab, in the clinic and out in the community. Together, researchers and patient advocates share the same goal of advancing care, improving quality of life and enhancing survivorship.
“I have learned that I really am an expert on the patient experience, and researchers find that valuable. I have been asked to share the experiences of cancer patients with research teams. I am grateful that researchers really listen and will change their approach based on what I share,” said Michele Longabaugh, workshop presenter and PIVOT member since 2016.
Additional PIVOT initiatives include the Rapid Reactor Team, or RRT, which provides immediate feedback to researchers on study design, recruitment strategies and data collection methods. Members are also compiling a library of educational resources to help patients learn more about cancer research advocacy, as well as a toolkit to assist in researcher/advocate partnerships.
“PIVOT will continue to focus on educating researchers and advocates about effective patient-researcher collaborations and identifying and developing tools to support these partnerships,” Sara said. “The workshop effectively informed a large number of people about this important initiative, and we look forward to seeing how these partnerships will energize our center’s cancer research efforts.”