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Get Involved

Patient partners bring the “lived experience” into all aspects of cancer research, as well as share their views on specific projects. They 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. For scientists who understand the biology of cancer intimately, such face-to-face meetings with survivors and their loved ones can be inspiring, strengthening their resolve to make a difference in people’s lives.

Patient partners also participate in educational activities about cancer research and what it means to live with cancer, review research to make sure it addresses patient concerns, suggest ways to improve recruitment and retention in research studies, help create patient-facing educational tools, partner with researchers to give presentations at meetings and help raise awareness about how cancer research improves patient outcomes.

Bench to Bedside: The Power of Patient Advocacy

Sylvia Hernandez, patient research advocate, and Cheryl Jernigan, lead patient research advocate, of Patient and Investigator Voices Organizing Together (PIVOT), discuss how 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.

There are several roles a PIVOT member can fill, including:

Leader team members: Provide overall guidance to the structure and development of PIVOT.

 

Task force members: PIVOT members who support PIVOT efforts such as communication, education and membership.

 

Patient research advocates: Cancer survivors, co-survivors and those at high risk for cancer who have attended PIVOT research advocate training and are willing to collaborate with researchers.

 

PIVOT members: Larger network of patient partners, researchers, clinicians, advocacy groups and community organizations interested in learning about or becoming involved in cancer research.

 

Researchers: Located at the KU Cancer Center, Children's Mercy or Stowers Institute for Medical Research.


PIVOT welcomes anyone living in Kansas and/or western Missouri to become a member. Members outside of the Kansas City area can actively participate in meetings and discussions through video conferencing technology. PIVOT is about representing multiple patient perspectives, so it is important we hear from individuals living in a variety of settings.

Commitment levels range from receiving ongoing communication to attending regular leadership meetings. Your commitment can also vary over time depending on changes in your schedule and/or interests. Once you sign up for PIVOT, you will speak to the program manager to get a better idea of what might be a good fit for your experience, interests and availability. PIVOT is evolving and opportunities are always changing; signing up is a great start.

Being involved with PIVOT is not the same as participating in a clinical trial. Learn more about clinical trials at The University of Kansas Cancer Center here.

Your email address will only be used by the PIVOT Leader Team to send you occasional updates about patient engagement in research opportunities, virtual trainings and news about PIVOT. We will never share your contact information with a research team or with any outside organization or business for any purpose without your consent.

Become a PIVOT Member

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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