PIVOT FAQs

PIVOT logo
Patients, families, and caregivers partnering with researchers from 
The University of Kansas Cancer Center 
to re‐define cancer research.


PIVOT Kim and Dan

Cancer survivor and PIVOT member, Kim Jones, with KU Cancer Center researcher, Dan Dixon, PhD

1.     Who can sign up to be a member of PIVOT?

       PIVOT members are categorized into 3 groups:

  1. Patient Voices include anyone who has experienced cancer, either as a patient or a family/friend caregiver. It also includes individuals who are 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. Sign up as a Patient Voice
  2. Researchers include anyone on a research team at The University of Kansas Cancer Center, Children's Mercy Kansas City or Stowers Institute for Medical Research.  Sign up as a Researcher
  3. PIVOT Champions include anyone else 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. PIVOT Champions can sign up here (link coming soon).

2.     Who is eligible to join the Patient Voices Network?

  • Lived Experience as a cancer patient, caregiver, or high-risk individual
  • No scientific background required
  • Not required to be a patient of KU  

3.     I'm a patient interested in participating in a clinical trial. Should I sign up for PIVOT?
PIVOT connects Patient Voices and researchers to improve cancer research. PIVOT cannot sign you up for clinical trials, but you will have the opportunity to be an advocate. If you are a patient looking for cancer clinical trials as a participant, please consider the following resources:

  1. PIONEERS Recruitment Registry
  2. Frontiers: The Heartland Institute for Clinical and Translational Research  

PIVOT Zoom and local

PIVOT members join a meeting via Zoom online video conferencing technology

4.     I'm interested in joining, but I don't live in the Kansas City area. Can I still participate?
Yes! PIVOT welcomes anyone in our region to join. We use video conferencing technology, like Zoom, so that members outside of the Kansas City area can actively participate. Research tells us that cancer patients living in rural areas may face different challenges from those living in urban areas. PIVOT is all about representing multiple patient perspectives, so it's important that we hear from patient partners living in urban and rural communities. 

5.     When are the meetings?
There are a variety of roles and opportunities in PIVOT. Commitment levels range from a few, periodic minutes of your time to regular, ongoing participation. Once you sign up for PIVOT and go through the orientation, you'll have a better idea of what kind of participation might be the best fit for your experience, interests and availability. PIVOT is a new, rapidly developing program, so opportunities are always changing. Signing up and staying updated is a great start.

6.     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, which provides details on possible roles and opportunities. If you are not sure yet how you might fit, the PIVOT orientation will help. Your role can evolve over time, depending on changes in your time or interest. 

7.       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.

 

Last modified: Nov 16, 2017
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