#LCSM

#LCSM Chat Topic 6-May-2021: The Hows and Whys of Cancer Research Advocacy

Cancer patient advocates first appeared decades ago, in the breast cancer community.  Patient advocates are dedicated to supporting patients and their loved ones, improving lung cancer education and awareness, and generating funds for advocacy and research.  With the advent of targeted therapies and immunotherapies for many types of cancer, the past ten years have seen a growing group of patients, survivors, and caregivers who have lived with cancer long enough to become active, knowledgeable advocates for their cancer community.

There is another type of cancer patient advocate called a “research advocate.” Research advocates are volunteers with a personal connection to cancer who are passionate about helping research translate into meaningful outcomes for patients and their families. Research advocacy provides perspective from the cancer patient community to help research focus on the questions most important to patients and design studies and trials that have a better chance of addressing these questions.  Many oncology-focused organizations such as the National Cancer Institute (NCI), NCI Specialized Programs of Research Excellence (SPOREs), SWOG, academic research centers, and industry find value in research advocacy. Several organizations(e.g., Research Advocacy Network, Cancer Information & Support Network, Progress for Patients, AACR Scientist↔Survivor Program, NBCC Project LEAD, IASLC STARS) have programs and materials designed to educate and support cancer research advocates.  There are even formal and informal networks for research advocates.

However, the group of active cancer research advocates is still small. The majority of those in the cancer community are unaware of their existence, contributions, and capabilities. 

On Thursday, May 6th, at 8 pm Eastern Time (5 pm Pacific), #LCSM Chat will discuss research advocates and how they can contribute to research.  Moderator and cancer research advocate Janet Freeman-Daily (@JFreemanDaily) will lead our discussion using the following topics:

  • T1: What is a cancer research advocate? How do research advocates differ from patient advocates?
  • T2: How do cancer research advocates bring value to research?  What specific inputs are helpful in different types of research efforts?
  • T3: What characteristics and skills are useful to a successful cancer research advocate?
  • T4: How can the cancer community develop more cancer research advocates? What resources are available to learn about research advocacy?
  • T5: How can we help the cancer community make best use of research advocates?

Please join us, and bring your experiences and wisdom! Remember to include #LCSM in ALL your tweets so the other chat participants can see them. You can read a primer on participating in the chat here. We look forward to chatting with you!

#LCSM Chat Topic 1-Apr-2021: Tell Us What You Want — We’re Listening

#LCSM Chat began almost eight years ago.  Since then, lung cancer screening, diagnosis, care, and treatment options — as well as social media platforms — have changed dramatically.  The #LCSM Chat team decided it was time to make some changes of our own.  

Our first change is a happy announcement:  please join us in welcoming medical oncologist Charu Aggarwal, MD, MPH (@CharuAggarwalMD) to the #LCSM Chat Moderator Team! Charu is the Leslye M. Heisler Associate Professor for Lung Cancer Excellence at Penn Medicine

Our second change is a survey of #LCSM Chat participants to learn more who participates in our chats and to help the #LCSM Chat team plan to serve the lung cancer community more effectively.  This survey will take about 5 minutes.  

The third change is integrated into #LCSM Chat on Thursday, April 1, at 8 pm Eastern Time (5 pm Pacific).  Tell us what you want from #LCSM Chat!  Moderator Timothy Craig Allen, MD, JD, FCAP (@TimAllenMDJD)  will lead our discussion of these questions:

  • T1. How we can better serve #LCSM patients, families and caregivers?
  • T2. How we can better serve #LCSM healthcare providers and other stakeholders?
  • T3. What topics would be most interesting in future chats?

Please join us, and bring your experiences and wisdom! Remember to include #LCSM in ALL your tweets so the other chat participants can see them. You can read a primer on participating in the chat here. We look forward to chatting with you!

#LCSM Chat Topic 4-Mar-2021: Liquid Bx—It pays to be vein

Cancer diagnosis for solid tumors has traditionally relied on biopsied tumor tissue. For patients already diagnosed with lung cancer, blood-based liquid biopsies are increasingly being used to look for bits of tumor proteins or DNA that can help identify suitable treatment options. The US FDA has even approved two liquid biopsies that can detect actionable mutations in lung cancer.

However, there are several liquid biopsies technologies, and researchers are exploring whether those could be used to answer other questions in the cancer space, such as:

  • Early detection: Is cancer present? If so, where is it?
  • Treatment monitoring: Is my treatment working? Is my cancer growing or spreading?
  • Prognosis: Is there any cancer remaining after treatment? Am I at high risk for a cancer recurrence? Might I benefit from further treatment?

Some liquid biopsy products that might answer these kinds of questions are in development, and may soon receive regulatory approval.

Cancer patient and research advocate Janet Freeman-Daily (@JFreemanDaily) is excited to moderate this week’s #LCSM Chat on the topic of liquid biopsies and host our two special guests:

  • Charu Aggarwal, MD, MPH, (@CharuAggarwalMD) is the Leslye M. Heisler Associate Professor for Lung Cancer Excellence at Penn Medicine. Her clinical research focus is on the development of novel immunotherapeutic approaches, and the discovery and application of biomarkers to guide therapy and monitor treatment.
  • Lecia Sequist, MD, MPH, (@LeciaSequist) is the Landry Family Professor of Medicine at Harvard Medical School and the Director of the Center for Innovation in Early Cancer Detection at Massachusetts General Hospital. Her research focuses on studying targeted therapeutics for lung cancer and bringing new non-invasive tests like circulating tumor cells and circulating tumor DNA to treat and detect lung cancer.

Please join us on Thursday, March 4th, at 8 pm Eastern Time (5 pm Pacific) to address the following topics:

  • T1. What are the different methods of liquid biopsy (liquid Bx)? What are the advantages and pitfalls of each?
  • T2.  How might liquid Bx be used for treatment monitoring and detecting disease progression?
  • T3. How might liquid biopsy be used for prognosis or to measure cancer remaining after treatment?
  • T4. How might liquid biopsy be used for early detection of cancer?

Please join us, and bring your experiences and wisdom! Remember to include #LCSM in ALL your tweets so the other chat participants can see them. You can read a primer on participating in the chat here. We look forward to chatting with you!

Added 6-March-2021:
Check out @Wakelet summary of this chat. You can click on tweets or links, or download as pdf.

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