Patient and Investigator Voices Organizing Together, PIVOT for short, is a patient advocacy research initiative at The University of Kansas Cancer Center. PIVOT provides cancer survivors, co-survivors and researchers the opportunity to work together to design research that may lead to improved treatments and therapies. It is one of the few such cancer center patient advocacy initiatives in the country.

PIVOT’s members provide guidance to cancer center researchers – whether they work with petri dishes in the lab, develop drugs or other treatment or prevention strategies, or oversee clinical trials – to ensure their work focuses on questions important to patients and takes patient and family preferences into account.

PIVOT aims to improve research by:

• Including patients' insights and perspectives gained from living with cancer in every step of the decision-making process to inform all aspects of research;
• Promoting meaningful partnerships, shared understandings and ongoing communications among patients, families, caregivers and researchers across the spectrum of cancer research; and
• Collaboratively developing education and training for patients, families, caregivers and researchers.

Patient research advocates can influence research in many practical ways. For instance, they can help researchers develop more reasonable expectations for patient participation in a clinical trial, which may improve accrual.

Peggy Johnson has been a patient advocate for nearly 30 years, as well as a breast cancer survivor for 7 years, following her diagnosis and treatment at The University of Kansas Cancer Center. Peggy is passionate about public policy and ensuring all patients have access to the best quality of healthcare and treatment. She works to safeguard patient protections in clinical trials.

A founding member of PIVOT, she serves as a patient advocate on several research projects at the cancer center, including acting as a highly engaged member of the Rapid Reactor Team. This is a group of advocates that can activate quickly to provide researchers feedback on a research plan. Each advocate brings a collective patient prospective to this team.

Peggy currently serves as a patient advocate on Dr. Christy Hagan’s research project, which is funded by Susan G. Komen, the world’s leading breast cancer organization. Beyond her work as a patient advocate, Peggy enjoys cooking and spending time with her husband, family and pets.

Kris Darnell is a mother, grandmother and grant writer, in addition to a cancer advocate, caregiver and survivor. Cancer touched her life as a young adult, when her mother was diagnosed with multiple myeloma. Years later, Kris was diagnosed with breast cancer.

Her personal journey inspired Kris to seek a cure for cancer and get involved as an advocate, with a specific interest in long-term and late effects of cancer and its therapies. She serves as a member of the PIVOT Leader Team and PIVOT Membership Task Force, and her involvement provides her the opportunity to share views on specific research projects, participate in cancer research educational activities and provide input on cancer research proposals.

In addition to PIVOT, Kris is involved in the Institutional Review Board for Human Research Protection Program at the University of Kansas Medical Center. Kris is the proud mother of three grown children and grandmother of 6 grandchildren. She lives on the Kickapoo Indian reservation and is an advocate for her community.