#LCSM Chat Topic 04/19/2018: Life & Breath Rally – Lung Cancer is a National Emergency

IMG_5087On Thursday, April 26th, many of us will gather in front of the Capitol Building in Washington DC at the Life and Breath (LAB) Rally. This is a grassroots effort of lung cancer survivors, caregivers, and advocates. You can follow the event on twitter at @LABLifeBreath and can read about it at labrally.eventbrite.com

Volunteers from several different lung cancer organizations will come together for the following common causes:

• To increase funding for lung cancer research, specifically through the Department of Defense.
• To encourage support for the Women and Lung Cancer Research and Preventive Service Act of 2018.
• To encourage a public service campaign by the Centers for Disease Control to promote lung cancer screening.

As many of us know, lung cancer is the most common cancer killer, taking the lives of over 400 people per day. This is not a political issue, but rather a national emergency. Although lung cancer prevention and smoking cessation campaigns are important, to focus solely on those aspects of the disease perpetuates the myths that lung cancer only affects smokers and that lung cancer risk ends with smoking cessation. In fact, never smokers and patients who have already quit smoking account for approximately three-fourths of all lung cancer patients. Once diagnosed, the 5 year survival rate for lung cancer is only 18%, markedly lower than that of other common cancers. Yet lung cancer research is historically underfunded by the NIH and the Department of Defense. THIS HAS TO CHANGE! With the Life & Breath Rally just around the corner, we will discuss the following in this week’s #LCSM Chat:

T1: What are the details of the @LABlifeBreath Rally? How can people participate if they can’t make it in person?

T2: How can we best advocate for more lung cancer research funding? Which facts should patients and advocates emphasize to their elected officials?

T3: What is the Women and Lung Cancer Research and Preventive Services Act of 2018? What is its purpose and how can we get more people behind it?

T4: Why are so few eligible patients screened for lung cancer by LDCT? What can we do to increase rates of lung cancer screening?

T5: Any final thoughts? What else would you like to see emphasized at the Life and Breath Rally next week?

Please join the #LCSM community and moderator @BrendonStilesMD for this important Chat on Thursday, April 19th, at 8 pm Eastern Time (5 pm Pacific). Please 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.

#LCSM Chat Topic 04/05/2018: Open Mic Nite

On Thursday April 5, 2018, at 8 PM Eastern Daylight Time (5 PM Pacific Daylight Time), #LCSM Chat will hold an Open Mic Nite to talk about whatever lung cancer topics are foremost on our minds. Our moderator will be Janet Freeman-Daily (@JFreemanDaily). This would be a particularly good chat for those who are just starting with Twitter or tweet chats (please check out our tweetchat primer).  Hope you’ll join us!

#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.”

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