Read time: 3 minutes.
Lung cancer research advocacy is about helping translate research into meaningful outcomes for people with lung cancer and their families.
This video is part 2 of a 3-part Advocacy 101 series and focuses on what research advocacy is, how it influences and directs lung cancer research, and the different ways to get involved.
If you missed part 1, Advocacy 101: Intro to Advocacy, you can watch it here. If you want to watch part 3 live on Monday, August 26 at 3 PM ET, you can register now for Advocacy 101: Patient & Self-Advocacy.
The panelists for this discussion on research advocacy include:
- Upal Basu Roy, PhD, MPH, LUNGevity Foundation Executive Director of Research
- John Freimuth, National Cancer Institute (NCI)
- Kris Kimball, Advocate, Care Partner, & Educator
You can watch the full video or use the timestamps below to skip to specific sections.
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What is Lung Cancer Research Advocacy? 5:00-11:30
Research advocacy is focused on making sure laboratory research is translated into meaningful outcomes for people with lung cancer and their families.
This section shares a helpful visual showing the differences between a “patient advocate” and a “patient research advocate.” Some key aspects of being a patient research advocate include:
- Working with researchers, regulators, government agencies, and the medical industry
- Participating in grant reviews, patient advisory boards, and more...
Meet the Panel: 12:00-18:00
Each panelist shares a little about their background and then answers the question: Why did you get involved in research advocacy?
Why is Research Advocacy so Important? 18:00-25:40
Some of the reasons mentioned by the panel include:
- Being a care partner for someone who has passed away means you’re the only one who can share their viewpoint and lived experiences
- Different people have different treatment goals and it’s important to share these goals
- It’s a way to make sure researchers prioritize what people with lung cancer care most about and is currently top-of-mind
How to Get Involved in Lung Cancer Research Advocacy? 25:40-37:50
Kris Kimball (advocate, care partner, and educator) shares her thoughts about being involved in reviewing research grants as a member of the EGFR Resisters, and Dr. Basu Roy shares about LUNGevity’s Patient FoRCe research center that has ongoing opportunities for people to easily get involved in lung cancer research.
John from the National Cancer Institute continues by sharing how advocates shape their work by getting involved in:
- Federal advisory committees and steering committees
- Reviewing research concepts, programs, and clinical trials
- Peer review panels
- Speaking engagements
- Ad hoc workshops
Get Connected with the National Cancer Institute:
Website: Cancer.gov Advocacy Relations
Email: [email protected]
Advocacy from a Care Partner Perspective: 37:50-47:00
Kris talks about her evolution as a care partner advocate, first for her late-husband Dave, and eventually into reviewing research grant proposals. She reflects on finding the types of advocacy she is good at and comfortable doing, as well as which types she isn’t comfortable doing.
As you look into any type of advocacy, be open to meeting new people. They will ask you to help in different ways and that will lead you to finding out what you enjoy.
Kris Kimball, Advocate, Care Partner, & Educator
Panel Question: What is the Biggest Change You’ve Seen in Lung Cancer? 47:00-51:00
The panelists talked about these changes that have taken place in the lung cancer space in recent years:
- The many new drug approvals and treatment plans including advances in precision medicine
- The growth and influence of patient advocates and caregivers being asked for their input
- Seeing people live longer with lung cancer and become survivors
Closing: Hope In Lung Cancer & Research Advocacy Tips: 51:00-60:00
Tips and takeaways for people interested in research advocacy:
- You don’t have to be a “science geek” to be a research advocate
- Make connections in the advocacy community—meet people
- Do what you like, but be open to new opportunities
- Remember your “why”
Part 3, Advocacy 101: Patient & Self-Advocacy, is upcoming on Monday, August 26 at 3 PM ET, and registration is now open.