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Give Back to Research

PIVOT Patient Research Advocacy Program

Patient and Investigator Voices Organizing Together, PIVOT for short, is a patient research advocacy 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 research advocacy initiatives in the country. With PIVOT, KU Cancer Center is expanding its mission to empower patients and advance quality, patient-focused cancer research and care. PIVOT helps ensure the cancer center maintains its sharp focus on patient-centered research initiatives.  

PIVOT Logo

PIVOT - Patient and Investigator Voices Organizing Together

PIVOT is one of the few cancer center patient advocacy networks that offers cancer survivors the opportunity to meet regularly with cancer center scientists to share suggestions and ideas that can help research better meet patient needs and improve quality of life.

Why is research advocate involvement important?

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 2019 members.
PIVOT 2019 Workshop.

PIVOT's vision is for patients, families, caregivers and researchers to work together to accelerate innovative approaches to re-define cancer research. PIVOT’s mission is to improve research by:

  • including patients' voices 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 understanding 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.

Patients, their friends and family caregivers know what it’s like to live with cancer. We bring a face, sense of urgency and wisdom about what is truly important to patients. –Cheryl Jernigan

Cancer survivor and PIVOT member

Educational Resources

Advocate journeys

PIVOT training.
Doug Sparling (Kansas City)
Doug Sparling is an author, artist, musician and technologist, but most importantly he has found his life calling as a cancer research advocate. Doug’s life has been touched all too closely by cancer. Early in life, his father died of a brain tumor, and later in life his mother died of appendix appendiceal cancer. In October 2017, Doug himself was diagnosed with incurable de novo stage four IV metastatic prostate cancer.

Ask Doug about his passion for cancer advocacy, and he will likely share his favorite quote from Friedrich Nietzsche, “To live is to suffer, to survive is to find some meaning in the suffering.”
 
Doug joined PIVOT in December 2018 after attending the first PIVOT workshop. He has since participated in two subsequent workshops. As a cancer research advocate, PIVOT has given Doug the opportunity to fulfill his dream of working alongside cancer researchers and to share his viewpoint from the eyes of a cancer patient. Not only has he met others who share his desire and passion, but through his work with PIVOT, he has also found a way to survive.

AACI Hill Day

Senator Moran with PIVOT members.
Pictured (left to right): Dr. Roy Jensen, MD, KU Cancer Center director; Senator Jerry Moran, U.S. Senator (KS); Kim Jones, PIVOT leader team; Broderick Crawford, PIVOT leader team
In 2019, two members of the PIVOT leader team – Kim Jones and Broderick Crawford – headed to Capitol Hill with KU Cancer Center Director Roy Jensen, MD, to participate in the Association of American Cancer Institutes (AACI)/American Association for Cancer Research (AACR) Hill Day. The event included 37 cancer centers in 24 states, cancer center directors, researchers, oncologists, survivors and other advocates who attended meetings with legislators and Capitol Hill staff to support stable funding increases for the National Institutes of Health and the National Cancer Institute. 
PIVOT Program Manager Sara Douglas.

Sara Douglas, MSN, RN, OCN - PIVOT program manager

To become a PIVOT member click here. To learn more, contact Sara Douglas at 913-945-6873 or PIVOT@kumc.edu.

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