#LCSM Chat Topic 3/22: Slicing the Pie–How Can Lung Cancer Patient Groups, Clinicians, and Researchers Best Work Together?

Lung cancer management has shifted from a broadly defined process to one increasingly recognized as narrow subgroups that have distinct patterns of cancer biology and optimal treatments.  The first patient group to splinter into a separate branch of management was the approximately 10% of people with EGFR mutation-positive NSCLC, and the treatment options for them continue to become deeper and more complex as we gain more active agents and struggle with enviable problems like the best sequencing and protection of the brain against metastatic spread. Other “driver mutations” such as ALK and ROS1, seen in about 4% and 1% of patient tumors, respectively, now also have several treatments and/or clinical trial options available.

Each of these biology-defined subgroups of patients now has an associated online group of patients and caregivers that share information and support but are also dedicated to facilitating clinical research for their population.  It is quite likely that many people participating in these online forums will become more knowledgeable about their disease than some oncologists.

What might be the role for clinicians and researchers in these patient communities? Some oncologists may not have experience or expertise in treating patients with these specific drivers. Other physicians may have a real expertise in treatment or research for that subgroup. How might their expertise be incorporated into these patient-caregiver communities? I have personally heard of some oncologists who felt that even though they were knowledgeable about the treatment options, their patient strongly advocated for another approach based on what they were told online.

Historically, online patient-caregiver groups and physician forums have had little overlap (the #LCSM community a rare exception).  I think it is fair to say that online patient-caregiver groups are especially valuable for rare subgroups, where patients are geographically decentralized, and knowledge among general oncologists is limited. Patients can dedicate more time and effort to learning about their rare mutation and novel treatments than nearly any oncologist, who is typically seeing many patients with many cancer types in the course of a day. Even lung cancer specialists have limited experience with the 1-4% populations that comprise the narrowest slices of the pie.

When patient-caregiver groups, clinicians and researchers share a common goal of moving the field forward, how might online groups bring them together to ensure that the best information is being shared and amplified, while also accelerating clinical research in their focused area?

Finally, pharmaceutical companies are increasingly developing or helping to sponsor patient-caregiver communities. This can certainly provide an opportunity to foster needed support and education, but skeptics may charge that this introduces a clear opportunity for commercial bias that could lead such groups to become too much like “fan clubs” for the agents promoted by these companies.

Please join us on Thursday, March 22 at 8 PM Eastern, 5 PM Pacific for a thoughtful discussion about how online patient and caregivers groups might best works with clinicians and researchers. We’ll cover the following questions:

  • T1) What are the most important benefits of online groups to patients and caregivers?? Where do research & education rank among these benefits?
  • T2) Is there a role for researchers or clinicians, in online patient-caregiver groups? What issues might arise?
  • T3) How might online groups best partner with researchers to accelerate research? Project by project? As long-term partners?
  • T4) Is misinformation a significant concern in online patient-caregiver groups?  What are some effective ways to limit misinformation?
  • T5) Does pharma/industry support undermine credibility & suggest commercial bias? Could there be benefit to industry involvement?

We hope to see you in the #LCSM chat on 3/22 at 8 pm Eastern Daylight Time (5 pm Pacific). If you’re new to tweet chats, please read our primer “To Participate in #LCSM Chat.”

#LCSM Chat topic 3/8/2018: Cancer advocacy 101–patients & conferences

Chemist Jean Cui at #ASCO17 posters with #ALK & #ROS1 NSCLC patients who thrive on drugs she helped develop

As cancer patients and caregivers transform into active cancer advocates, they may think about attending medical conferences.  On March 8, at 8 pm Eastern Time (5 pm PST), #LCSM Chat will discuss various aspects of cancer advocate participation in medical conferences.

Some reasons for cancer advocates to attend medical conferences are to:

  • Learn more about cancer and treatment options for cancer
  • Get details about new research
  • Meet the top doctors who treat their type of cancer
  • Support an advocacy organization’s outreach booth
  • Network with other advocates, as well as clinicians and researchers
  • Share an advocate’s perspective on a specific topic, sometimes as an invited speaker

As more advocates participate in conferences, the conference organizers, professional societies, and medical practitioners are coming to understand the benefits of including advocate voices in their programs. #LCSM Chat member Janet Freeman-Daily was recently interviewed by the International Association for the Study of Lung Cancer about her participation in conferences–read the resulting article here: Why Should Advocates Attend Academic Lung Cancer Conferences?

Tools exist to help advocates navigate cancer conferences and understand the content they will see:

If you know of other resources, please share them in the comments on this page or in the chat.

Some professional societies and cancer nonprofits sponsor programs that enable cancer advocates to attend conferences and learn more about medical research:

  • AACR’s ScientistSurvivor Program
    Participants receive travel grants and participate in special educational programs at cancer research meetings.
  • ASCO’s Conquer Cancer Foundation Patient Advocate Scholarship Program
    Provides need-based grants to cover travel and registration for a variety of ASCO meetings, including the huge Annual Meeting in Chicago each June. Applications for the Annual Meeting are usually accepted during a window in early March.
  • RAN’s Focus on Research Scholar Program
    Scholars participate in preparatory conference calls, virtual classroom (webinars), learning materials and mentoring for research advocates to improve skills and understanding of biomedical research, and attend the ASCO Annual Meeting.
  • International Association for the Study of Lung Cancer (IASLC) Travel Awards for World Conference on Lung Cancer (WCLC)
    Provides travel grants to WCLC, which is held in a different international city each year—it will be in Toronto Canada September 2018.

Our moderator Janet Freeman-Daily (@JFreemanDaily) will lead our discussion using the following prompts:

  • T1: When a cancer patient/caregiver attends a medical conference, what are benefits to the patient/caregiver? Benefits to medical professionals?  To the conference?
  • T2: If you have attended a medical conference in which patients/caregivers participated, what did you like most about that conference? (Pls state whether you attended as patient, caregiver, or med professional)
  • T3: If a cancer patient or caregiver wanted to attend a medical conference, which would you recommend for their first conference, and why?
  • T4: What tips would you give a cancer patient or caregiver for making the most of their conference experience?
  • T5: What programs help cancer patients and caregivers attend and/or afford conferences? Do you have experience with any of them?

We hope you’ll join our #LCSM Chat on Thursday 3/8 at 8 pm Eastern Time (5 pm Pacific). If you’re new to tweet chats, please read our primer “To Participate in #LCSM Chat.”

#LCSM Chat Topic 22-Feb-2018: Lung cancer research–Why we need it and how we can get more

“Cancer research” is a broad term that encompasses everything from basic bench science, to translational research on patient-derived tumor specimens, to clinical trials, to studies on patient centered outcomes.  While it is obvious to all of us in the lung cancer community that research is critical to improving patient outcomes, lung cancer remains underfunded compared to other common cancers.

Several different mechanisms exist to fund cancer research, including private philanthropy, Big Pharma, not-for-profit cancer research and advocacy groups, and government organizations including the DOD and NIH/NCI among others.

Given funding imbalances, it is relatively easy for lung cancer patients and advocates to make the point that allocation decisions may have historically been driven by social and political considerations, rather than by the toll of the different cancers on society.  However, it is a much greater challenge to get others to recognize the imbalance, to change that pattern, and to actually drive an increase in resources dedicated to lung cancer research.  Such efforts will undoubtedly require a focused effort by the lung cancer community, including those of us involved with #lcsm.

With these thoughts in mind, please join our #LCSM chat this Thursday (moderated by @BrendonStilesMD) as we explore lung cancer research, what it means to patients, how we can better integrate researchers and patients/advocates to coordinate efforts, and how we can ultimately generate more money specifically directed towards lung cancer research.  We will cover the following topics:

  • T1.  Tell us what research means to you.  How have you participated in research and/or how has lung cancer research benefitted you personally?
    (examples include clinical trials, new drugs, biobanking, laboratory tours, volunteerism or support for lung cancer foundations, grant review panels, etc.)
  • T2.  How can we help lung cancer patients better understand research and just as important, how can we help basic science researchers understand the needs of lung cancer patients?
  • T3.  How can we use our collective voice to increase funding for lung cancer research?
  • T4.  What types of lung cancer research do you think are most important to fund?

Please remember to include #LCSM in ALL your tweets so the other chat participants can see your comments. You can read a primer on participating in the chat here.  Hope you’ll join us!

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