Home » Lung Cancer » My Cancer Research Advocacy Activities (May 2023)

My Cancer Research Advocacy Activities (May 2023)

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Cancer research advocacy encompasses several types of activities and a broad range of skills. The needs of the lung cancer patient population alone are HUGE, and no one person or organization has the time, skills, or bandwidth to address them all. The featured image on this post is a range of tall mountains for a reason.

I believe that the only way to stay engaged in cancer research advocacy over the long haul is to employ skills you enjoy using on projects that have personal meaning for you. I try to focus on activities that allow me to use my unique skills and (hopefully) improve outcomes for the greatest number of patients.

Some activities require multiple hours every week–these are my primary projects. Some have intense demands of several hours over a few days or weeks; examples are advisory boards, preparing a talk, grant reviews, or journal articles. Others may only require an hour or two each month, such as a serving as a patient advocate for a research committee.

To give you a sense of what one cancer research advocate’s activities might be, I’ve listed below those in which I’m currently involved. If this looks like a lot, please keep in mind that each advocate has a unique set of health and personal circumstances that influence how much of their energy and other resources they are able to give to advocacy. In my case:

  1. I am retired, no longer have children at home, and have the luxury of choosing what I want to do with my time.
  2. I’m on a cancer therapy that has tolerable side effects and leaves me with energy to do more than focus only on my own healthcare.
  3. I get to use skills I enjoy (e.g., writing, speaking, analyzing), work with smart people who are dedicated and compassionate, and learn about subjects I love (science and technology).
  4. The connections and reputation I’ve developed over ten+ years of lung cancer patient advocacy have brought me opportunities about which I wasn’t even aware when I first began advocacy work.

Primary Projects (several hours every week)

  • The ROS1ders nonprofit (co-founder, president, and board chair)
    A global group of patients and caregivers living with ROS1+ cancer that seeks to improve outcomes for all ROS1+ cancers through community, education, and research.
  • IASLC STARS program (co-developer and consulting staff)*
    STARS aims to increase the number of patient research advocates (PRAs) equipped to provide accurate scientific translation and patient perspective for lung cancer research and policy.

Advisory Panels

  • Fred Hutch/UW/Seattle Children’s Cancer Consortium External Advisory Board*
  • National Cancer Institute (NCI) PE-CGS Network External Advisory Panel
  • NCI Cancer Moonshot Biobank External Scientific Panel
  • HICOR Value in Cancer Care Initiative (VCCI) Steering Committee
  • Patient advisory boards for industry*

Patient Research Advocate

  • University of Colorado Cancer Center Thoracic Oncology Research Initiative (TORI)
  • NCI Small Cell Lung Cancer Consortium
  • Fred Hutch Lung Specialized Project of Research Excellence (Lung SPORE)
  • NCI Technology Research Advocacy Partnership (NTRAP)
  • The BMJ (also known as British Medical Journal) patient reviewer
  • Guideline development with professional oncology organizations
  • Co-author on journal articles and other writing projects
  • Invited speaker/panelist for conference presentations*
  • Participation in PCORI and other patient-centered research projects

Advocacy Organizations

Professional Organizations

  • International Association for the Study of Lung Cancer (IASLC), Patient/Survivor member
  • American Society of Clinical Oncology (ASCO), Patient Advocate member
  • American Association for Cancer Research (AACR), Affiliate member

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Disclosures

When advocates provide value to projects, I believe they should be paid for their time, just as any other professional would be. I receive compensation for some activities (such as an honorarium for speaking); these are marked with an *. If an organization requires me to travel for a meeting, I receive compensation for travel expenses and often free conference registration.