#LCSM Chat Oct 24, 2013: “Social Media & Lung Cancer Advocacy: What Can I Do?”

Recent Lung Cancer Social Media (#LCSM) chats have focused on medical topics.  Collaboration to get better treatments to patients sooner is an important part of #LCSM, but it’s not all we’re about.

#LCSM is also about helping patients and families on a lung cancer journey, ending the stigma, and advocating to increase support for lung cancer patients and research.

Accordingly, the next chat will focus on lung cancer patients, families, and advocates rather than medical topics.  The topic will be Social Media & Lung Cancer Advocacy: What Can I Do?”  moderated by Laronica Conway, an LC advocate, and Janet Freeman-Daily, an LC patient (Squanch from Inspire.com).   The chat will be held Thursday, October 24, at 8 PM Eastern (5 PM Pacific).

Please send ideas for future #LCSM chat topics to lcsmchat@gmail.com.

Looking forward to seeing you on Twitter!

How Much Evidence Do We Really Need to Change Treatment Recommendations? – October 10

By Dr. H. Jack West

One ongoing controversy in the world of managing cancer, especially one in which cures are elusive, is how high the bar should be to guide treatment recommendations. The “gold standard” to change treatment is a significant improvement in the primary endpoint, ideally overall survival, in a prospective, randomized phase III trial with several hundred or even several thousand people. In some settings, treatment recommendations may not even change until a few randomized phase III trials show the same significant improvement with a new treatment approach.

But the reality is that sometimes we want or need to apply promising ideas that don’t have an overwhelming amount of evidence yet. That may be because a very promising result in phase II will typically take 3-5 years before the results of a subsequent larger phase III trial is completed and reported, with another 6-12 months before that new agent or combination is FDA approved and commercially available. That may also be because some of these clinical questions are too rare to test in a large phase III trial setting. For people with a ROS-1 rearrangement, who represent 1% of NSCLC, or those with leptomeningeal carcinomatosis, we can’t realistically expect to complete a randomized phase III trial with hundreds of patients assigned to one treatment or another.

  • So the first question is whether the medical community should be guided by a specific level of evidence to shape cancer treatment, and can the standard be lowered for clinical subgroups or settings in which the numbers are too small to ever run a large trial? And should the standard be higher in a curable setting like early lung cancer (is stereotactic body radiation therapy an appropriate alternative to surgery?) vs. metastatic disease because there is “more to lose”?
  • Second, should patients be able to dictate a lower level of evidence being required if they provide “informed consent” that one approach is conceptually attractive but not well tested?

And related to both of these points, is there a lower standard required when the cost of the treatment is low and/or the patient is paying and not insurance/broader society? If proton beam radiation therapy is three times as expensive as conventional radiation and has no actual evidence it’s superior, is it appropriate for institutions to market it (at a handsome profit) and/or
patients to expect it? Is it more appropriate if patients pay for some or all of the cost difference vs. passing on the costs to the others?

These are timely, important questions, so please join us on Thursday, October 10th, at 8 PM Eastern, 5 PM Pacific. Just get on twitter, filter your messages and add the hashtag #lcsm to your tweets, and join the conversation!

How Can We Accelerate Cancer Research with Online Education and Social Media? – September 26

By Dr. H. Jack West

We are in the midst of a remarkable transitional time in cancer care that is exciting but challenging, since we now have patients divided into smaller and smaller groups based on molecular markers.  Along with that, more and more patients and caregivers are participating in social media and online discussion groups.  What are the implications for these changes, and how can we use them to accelerate the pace of clinical research?  I’d like to focus on a couple of key questions for our next lung cancer tweetchat on September 26, at 8 PM Eastern, 5 PM Pacific.

1) What are leading barriers to clinical research? Which ones might be addressed by connecting members of the lung cancer community online?

2) Can patients & caregivers share data, e.g., Patients Like Me, to  facilitate better understanding & generate more interest from pharma companies in studying lung cancer patient groups (potentially narrow ones like those with ROS-1 rearrangements)?

3) Can we lower barriers by making it easier for patients to learn about & travel to participate in trials? Share air miles to help people travel for trials? Offer housing as a network? Telemedicine visits to minimize travel?

I sincerely hope we haven’t reached the pinnacle of our efficiency in cancer research, because it’s a frustratingly, even maddeningly slow process. So what other ideas do you have? Your ideas could lead to a faster pace for the trials that lead to new treatments in lung cancer.

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