The NCI Technology Research Advocacy Partnership (NTRAP) incorporates the perspective of cancer patients and survivors into technology development research programs. NTRAP has contributed to the Innovative Molecular Analysis Technologies (IMAT) program since 2016 and the Informatics Technology for Cancer Research (ITCR) program since 2019. Both the IMAT and ITCR grant programs support early stage technology development to impact cancer research. They seek to include cancer patients as a critical end-user as patients and the patient advocate community ultimately benefit from the research conducted.
The purpose of NTRAP’s involvement is to:
- Improve appreciation for patient needs and interests and motivate the investigators and provide a sense of urgency for their progress,
- Assist in translation and dissemination efforts for successfully developed technologies by identifying and highlighting promising projects,
- Aid research groups in explaining the potential for the technology to end-user communities, especially the patient community,
- Assist in any clinical trial planning efforts, especially as related to understanding patient concerns, sensitivities, and enthusiasm for being a part of new solutions,
- Improve language used to describe research that includes patients or patient samples (click here to read Sensitivity Expectations of Investigators)
Meet Our Patient Advocacy Team:
Chuck Schmaderer
Patient Advocate
Years served: 2019-Present
“The intersection of science and technology has never been greater, creating a truly unique opportunity to advance cancer research and treatment as we know it. The interdisciplinary expertise and talent of IMAT and ITCR investigators is tremendous and I'm honored to be part of the NTRAP team helping bring their innovations to life. When you talk about cancer, you're talking about families, and I'm proud to bring the voices of patients and over ten cancer non-profits to the innovative projects under development.”
Jo Kenney
Patient Advocate
Years served: 2022-Present
“As an educator and cancer survivor I see the need for greater discourse and involvement from the patient community in the research process; from deciding what to research to how to best let the community know about research outcomes and opportunities. I believe the advocates’ voice can help researchers seek solutions and conclusions that directly impact the community; resulting in a product that patients are willing to use or information they can access and understand. As a survivor and an advocate, I can use my voice to share and promote research in a manner that may increase reach and adoption.”
Janet Freeman-Daily
Patient Advocate
Years served: 2022-Present
“My previous career (before cancer research advocacy) was in aerospace systems engineering. I love learning about new technologies and tools that can help move cancer research forward and bring hope to more patients and their families.”
Christina Sisti
Patient Advocate
Years served: 2023-Present
“Becoming an advocate blends well with my commitment to cancer advocacy and educational background. My years as an active advocate, researcher, and bioethics consultant, combined with my experience as a cancer patient and caregiver, allow me to comprehend the needs of patients and caregivers. Being a part of NTRAP enables me to integrate the vital role of the patient advocate while learning how technology is innovating cancer research.”
Laurie Cynkin
Office of Advocacy Relations, NCI
Years served: 2016-Present
“Cancer research advocates play an integral part in NCI’s cancer research process. They are looked upon to provide the collective patient perspective and to ask the questions that only a patient, survivor, or caretaker would know to ask. The IMAT and ITCR programs have put their trust in a select team of advocates who serve as a sounding board for program leadership and place a human face alongside the technology and informatics driving cancer research forward. As a member of NCI’s Office of Advocacy Relations, I am gratified to be a part of this team ultimately dedicated to improving outcomes for patients.”
Kelly Crotty
IMAT Program Manager, NCI
Years served: 2019-Present
“Cancer researchers and patient advocates share a common goal: improving patient care, quality of life, and cancer survivorship. I chose to be a part of the NTRAP team because I want to help educate patients about ongoing research and incorporate the patient perspective in the planning and implementation of cancer research.”
Juli Klemm
ITCR Program Manager, NCI
Years served: 2019-Present
“I am honored to join the NTRAP team to have the opportunity to bring the patient perspective to the ITCR program. Communication is a critical component of the cancer research enterprise and I’m excited to foster a dialog between this passionate group of advocates and the talented informatics researchers supported through ITCR toward the goal of maximizing the use of data to improve cancer outcomes. Throughout my career, I’ve seen how bringing together diverse perspectives leads to the most innovative ideas and NTRAP is doing just that for cancer research technology development.”
Tony Dickherber
IMAT Team Member, NCI
Years served: 2016-Present
“As an engineering student, I fell in love with the field of biotechnology when I saw it through the eyes of patients whose lives were transformed by innovations from this field. All engineers are interested in building things that solve problems and are useful to the people around them, but hearing testimonials from former patients whose lives were transformed by technologies developed by the Medtronic corporation during one of their annual meetings made clear to me that this field was where I wanted to contribute whatever I had to offer. That is why I am so grateful that I can work with NTRAP to ensure that the patient’s voice and perspective is always part of our conversation as we play our part in advancing biotechnology in the fight against cancer.”
Alumni
- Anne Marie Mercurio
Years served: 2016-2019 - Deneen Hesser
Years served: 2016-2021 - Brittany Avin McKelvey
Years served: 2016-2023
For questions about or for the NTRAP team, please email NTRAP@nih.gov.
For general cancer-related information, call 1-800-4-CANCER or visit www.cancer.gov/contact.