Patients, families, and caregivers partnering with researchers from
The University of Kansas Cancer Center
to re‐define cancer research.
Cancer survivor and PIVOT member, Kim Jones, with KU Cancer Center researcher, Dan Dixon, PhD
1. Why do we need PIVOT?
With PIVOT, patient partners are helping to shape cancer research that reflects what is important to those affected by cancer. PIVOT makes cancer research better!
2. Who is a patient partner?
Individuals who have experienced cancer as a patient/survivor, family/friend caregiver or someone at high risk due to their genetics. Patient partners help bring the "lived experience" into all aspects of cancer research.
3. How does PIVOT work?
Patient partners will share their views with researchers at KU Cancer Center. This will happen in discussions, activities and meetings.
4. How do patient partners help? ·
- Share their views on specific projects
- Participate in educational activities about cancer research and what it means to live with cancer
- Review research to make sure it addresses patient concerns
- Help make educational tools
- Partner with researchers to make presentations at meetings
- Help raise understanding about how cancer research improves patient care
5. Who can sign up to be member of PIVOT?
PIVOT members are categorized into 3 groups:
- Patient partners: anyone who has experienced cancer as a patient or a family/friend caregiver. It also includes individuals who are genetically at high risk of cancer and have undergone related decision-making, testing or procedures. No scientific background or research experience is required. Patients are not required to be patients of KU.
- Researchers at The University of Kansas Cancer Center, Children's Mercy Kansas City or Stowers Institute for Medical Research.
- PIVOT Champions: anyone who is interested in PIVOT. Examples might be health care providers, members/staff of a cancer-related advocacy organization, members of a community organization and others.
6. I'm a patient interested in participating in a clinical trial. Should I sign up for PIVOT?
PIVOT promotes partnerships between patients and researchers to make research better. PIVOT cannot enroll patients onto clinical trials. If you are a patient looking to enroll in a clinical trial as a research participant, please consider the following resources:
PIONEERS Recruitment Registry
Frontiers: The Heartland Institute for Clinical and Translational Research
PIVOT members join a meeting via Zoom online video conferencing technology
7. I'm interested in joining PIVOT, but I don't live in the Kansas City area. Can I still participate?
Yes! PIVOT welcomes anyone in Kansas and Western Missouri. We use video conferencing technology so that members outside of the Kansas City area can actively participate in meetings and discussions. PIVOT is all about representing multiple patient perspectives, so it's important that we hear from patient partners living in a variety of settings.
8. When are the meetings?
There are a variety of roles and opportunities in PIVOT. Commitment levels range from attending a one-time event to attending regular meetings. Once you sign up for PIVOT and go through the orientation, you'll have a better idea of what might be a good fit for your experience, interests and availability. PIVOT is developing, so opportunities are always changing. Signing up and staying updated is a great start.
9. Am I committing by signing up?
No. Signing up just means that you are interested in learning more about PIVOT and receiving updates. Signing up allows us to send you information, such as the PIVOT orientation, where you can learn more about what possible roles and opportunities. Your role can change over time depending on changes in your time or interest.
10. How will my information be used?
Your email address will be used by the PIVOT team to send you occasional updates on 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 getting your permission first.
Mar 21, 2018