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A louder patient voice in cancer research

November 17, 2016

PIVOT MembersThe University of Kansas Cancer Center is bringing scientists and patients, already kindred spirits in a cause, even closer together.

Called PIVOT (Patient and Investigator Voices Organizing Together), the new program’s goal is to ensure cancer center scientists – whether they work with petri dishes in the lab, develop drugs or oversee clinical trials – receive direct guidance from patients, ensuring their work better meets patients’ needs and improves their quality of life.

Patient advocacy in cancer research isn’t new, but few cancer centers have developed the concept into a formal structure. In the new program, about a dozen patients and co-survivors (families and friends) meet monthly with researchers and cancer center executives.

Initial sessions, which launched in August 2016, focus on developing the core team, its goals and direction. The Midwest Cancer Alliance, KU Cancer Center’s community outreach division, is closely involved.

For scientists who understand the biology of cancer intimately, such face-to-face meetings with survivors and their loved ones also can be inspiring, strengthening their resolve to make a difference in people’s lives.Patient and Investigator Voices Organizing Together logo

“With PIVOT, we are expanding on our cancer center’s mission to empower patients and advance quality cancer research and care,” said Roy Jensen, MD, cancer center director. “This platform will help us sharpen our focus on patient-centered research.”

The patients have faced a variety of cancers – breast, HPV-related cancers and pediatric Hodgkin’s lymphoma, to name a few. They also represent a variety of demographics and locations in Kansas and western Missouri.

Cheryl Jernigan, a survivor and PIVOT member, believes patients can influence research in many practical ways, such as improving treatment costs and access, expanding clinical trial recruiting efforts and making research information more patient-friendly.

“Patients, their friends and family caregivers know what it’s like to live with cancer 24/7,” she said. “We bring a face, sense of urgency and wisdom about what is truly important to patients.”

She added, “We can and are impacting research’s design, implementation, oversight and translation to public audiences in ways that make a difference for patients.”

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