The University of Kansas Cancer Center’s PIVOT Program Brings Together Patients and Researchers

Patient and Investigator Voices Organizing Together (PIVOT) is The University of Kansas Cancer Center’s patient research advocacy group connecting cancer survivors and co-survivors with researchers to advance quality, patient-focused cancer investigation and care. 

It’s only one of a few cancer center patient research advocacy initiatives in the country. 

The KU Cancer Center supports the PIVOT program because patient research advocates bring personal and unique perspectives from their cancer experiences.

Tonia Yelder, a 21-year breast cancer survivor who was also diagnosed with esophageal cancer in 2019, leads PIVOT and recently discussed the value of patient research advocates and researchers working together.

How did you become interested in patient research advocacy?

When I was diagnosed with cancer, I felt helpless and wanted to do something for other cancer patients. Later on, I met a fellow church member who survived cancer and told me about PIVOT. It sounded right up my alley. I like facts. I like data. And I like to question things. I choose to be a research advocate because I refuse to believe life is over when you receive a cancer diagnosis. I have so many questions, and I want more answers for better outcomes. Lab research has the power to change the future of cancer treatment – and help a lot of people!

What does it mean to be a patient research advocate?

A patient research advocate can be a cancer survivor or co-survivor – a family member or friend who has helped a loved one through the cancer experience.

It’s a very personal choice to advocate for research as a patient. Usually, it’s someone who has a lot of questions and not only wants answers for their own benefit, but for society as a whole.

Through PIVOT, patient research advocates provide a voice in cancer research. They work closely with basic science researchers and medical scientists to provide personal insights on how they can improve patient care, quality of life and cancer survivorship.

How do patient research advocates and researchers work together?

Since its inception in 2016, PIVOT membership has grown considerably with patient research advocates supporting our researchers in a variety of ways:

• Rapid Reactor Team: These collaborative sessions let researchers gain immediate patient-centered feedback during any phase of a research project. Additionally, it helps researchers build relationships on the populations they serve in a conversational setting.
• One-on-One Matches: A PIVOT member can partner with an investigator who is working on a long-term research effort.
• Clinical Trials and Outreach: PIVOT members support KU Cancer Center’s ongoing education and awareness efforts – particularly among minority groups – for its hundreds of clinical trials. Typically, minority populations have low clinical trial participation. In fact, recent FDA data shows only 25% of clinical trial patients were minorities. I participated in a clinical trial when I was diagnosed with cancer so I know the important role it can play in an overall treatment plan. PIVOT helped with a recent KU Cancer Center minority outreach education campaign by attending focus groups and participating in a photo shoot.  A few of our members are featured in a mural located at Guadalupe Centers Middle School in Kansas City, Missouri.
• Community Education: Dr. Roy Jensen, vice chancellor and director of KU Cancer Center, hosts “Bench to Bedside,” a weekly podcast where he discusses the latest news and developments related to cancer care, clinical trials and research. Several patient research advocates have joined him to discuss PIVOT and encourage other cancer survivors and co-survivors to explore patient research advocacy.

A patient research advocate can be involved at any stage of research. How does PIVOT help cancer center investigators at the clinical trial stage?

At any given time, the KU Cancer Center is managing more than 370 clinical trials, including early phase clinical trials, at our KU Clinical Research Center, which is supported through funding from the Johnson County Education Research Triangle (JCERT). We are fortunate to have a dedicated early phase clinical trial unit in our region, and it is important people are aware they have this resource.

Many of our advocates have participated in clinical trials so they bring their personal experience to researchers. Our advocates can identify ways to aid in recruiting and retaining participants. For example, their perspective of a patient with low energy, or one unable to travel, can help researchers determine if taking daily blood draws is necessary, or if an adjustment can be made that may enable a participant to stay in the trial more easily.

In addition, patient research advocates can help researchers better articulate a study’s purpose, which can facilitate better patient enrollment. PIVOT members ask the researchers questions before they meet with the patients so they have a better understanding of what information is most important to patients. Transparency, especially when it comes to early phase clinical trials, is so important. Those patient-doctor conversations can help patients better understand how they – and other patients – can benefit from the trial.

PIVOT members also provided insight on a patient-friendly enhancement to the KU Cancer Center’s KU Clinical Trial Finder app. The app was initially targeted to physicians, but now individuals can search clinical trials focused on treatment, prevention, cancer screening or quality-of-life/survivorship.

What motivates you and other PIVOT members?

I am here to serve my community. Many of the PIVOT advocates feel the same way. Each of us has our own cancer story. PIVOT members want to make a difference in better treatment and outcomes for cancer patients. By sharing our lived cancer experience with researchers, we bring ideas and more patient-centric approaches to research studies. 

Interested in becoming a patient research advocate? Call Tonia at 913-945-6622 or email PIVOT@kumc.edu.