GRACE :: News/Info

Introducing the GRACE Cancer Video Library (Starting with Lung Cancer)

I’m very pleased to announce the launch of the GRACE Cancer Video Library, a new format for presenting content that I hope will be appealing for everyone and will allow GRACE to provide a constant stream of new content from multiple experts on a broader range of subjects than we’ve ever been able to cover.

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The format will be a variant of what we’ve done before and will I think be very helpful for users.  Each presentation will be on a limited question, with an expert answering it in 2-5 minutes or so, which is basically the limit of our attention span (even if we try to kid ourselves otherwise). Obviously, there are some complex topics in cancer, so the library on lung cancer will include a comprehensive collection with many related questions/videos that you can review one at a time, at your own pace.  The entire library is being built as a master table of contents, and you can focus on just the areas of interest to you by clicking to expand a subject and sub-group of videos within it. 

Importantly, at this point, most of the videos are still being recorded and edited, so many of the topics have “placeholders” of the titles without the video yet available. Those with videos have a “bullet” before them (and the categories with videos within have a bullet), and are preceded by a code for their place in the library (such as LU-FB04) and duration in parentheses after them. Over the coming months, more and more of the titles will have completed videos.

You can focus on only the areas of greatest interest to you, so if you are just in the process of an initial workup for lung nodules, you can concentrate on a few videos about lung cancer screening and risk factors and the process of working up a possible early stage lung cancer. If you have an EGFR mutation-positive advanced lung cancer with brain metastases, you can focus on videos introducing the basic approach to stage IV (metastatic) lung cancer, EGFR mutation and first line treatment, and the treatment of brain metastases.

The format is mobile-friendly, and if you want to print the content, the transcripts and figures are available in a pdf posted with the video.  We’re filming and editing the videos now, so while there are only a limited number available now for viewing, we’re editing them at a rate of about 3/week to be added to the collection. The table of contents shows what you can expect to see filled in over the next 6 months. And if you can think of a subject that isn’t being covered, there’s a link for you to offer the suggestion.

This format is one I think will work very well for all of us, for many reasons.  I hope you’ll be able to find and review the exact content you want, while having to sit through no unrelated content that would be included in a longer talk.  You can review and re-review at your own pace. We can easily include material from dozens of different specialists in a relatively convenient way for them. We can more easily introduce new subjects, ranging from kidney cancer to colon cancer to leukemia and myeloma, over the next year or two, only needing the limited time of a handful of experts in these subjects. And this format allows us to even film experts speaking in other languages, which we’re going to try to do very soon.   It will be nice to become the truly “global resource” our name indicates when we offer videos in Chinese and Spanish as well as English.

We hope and expect to grow the video library over the next several years into a truly broad, comprehensive collection of subjects throughout cancer over the next few years, with dozens of experts speaking as a part of hundreds of videos.  As new tests and trials and treatments emerge, we will add to or replace the orginal ones in the collection, keeping it current over time. We’ll also work on developing a mobile application for oncologists to write an “information prescription” to patients that they can e-mail links of video collections to, so that patients can learn about what they would want to know as now important for them.

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I hope you’ll check it out and offer your feedback. We’re excited to move forward with a new format that I think will become the ideal platform for sharing new information.

Dubious ASCO Highlights, BS Endpoints for Ineffective Drugs, and the Credibility Gap

As many people in our readership know, the ASCO conference is the biggest and most important cancer conference of the year, and there are many competitors for the biggest highlights.  I was therefore annoyed to see that the top-listed highlight in the Medivizor blog description of ASCO highlights, for lung cancer and in general, was about anamorelin, an agent tested to combat cancer-related cachexia (severe weight loss) and associated weakness in patients with lung cancer.

You may note that this agent hasn’t received a lot of mention on the GRACE website or many other media sources.  It doesn’t actually crack the top 100 (and probably not top 250-500) top findings from ASCO.  Why does it merit mention as a highlight in some places? I’d bet good money that they are paid to highlight this work to patients and mislead them into thinking that the “positive” results actually matter.

Bullshit detectorI haven’t really spoken about anamorelin on the GRACE site before, even though their approach represents a lot of what we should disdain about drug development for cancer. My restraint has stemmed largely from the statement ingrained by my mother (and I’m sure by many of your parents as well: “If you don’t have anything nice to say, don’t say anything.” I’ve felt that in the absence of evidence showing some meaningful benefit, anamorelin doesn’t merit the time or effort to discuss it here. I’m certainly not the only one — of the 100 or more lung cancer experts I spoke with at ASCO, anamorelin was mentioned by exactly NONE of them — with good reason. It doesn’t deserve to be on the radar of highlights in lung cancer or any cancer. So why would it be front and center on a patient-oriented ASCO summary? Either anamorelin’s manufacturer paid for it, or the author is very gullible and not qualified to provide commentary about ASCO highlights.

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Introducing the New GRACE Cancer Video Library!

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Over the next several weeks and months, you’ll see the roll out of a steady diet of new videos in a slightly different format. Historically, we’ve captured talks primarily oriented toward our live audience at conferences and edited them into pieces to offer people online. While certainly a helpful resource for many people, it is optimized for the live audience, and we simply do the best we can for the much larger number of people who view the content as a podcast. The video pieces are often long and may just split a 20-30 minute talk into two parts that cover many questions in each. Some of these have been done with my rudimentary videography skills and a handy cam, leading to a rather low quality A/V experience for the audience.  And the topics are a collection of issues I and other faculty members happen to think of as the most timely issues.

Our new offering will be in a comprehensive GRACE Cancer Video Library, still using a video format, but optimized for an online audience. How? Each video, recorded by a real videographer with more professional sound and lighting (though not makeup or a teleprompter). Each will cover a specific question/topic in about 2-5 minutes, so within someone’s realistic attention span, with the faculty member speaking to the video audience.  These will be able to be readily viewed on a mobile device anywhere, as well as on a laptop or desktop computer. In addition to watching on video, it will be possible to download a transcript with any figures included. 

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This Is Not a Request for Donations…

GRACE helps patients and their families figure things out during incredibly challenging times. 2015 Spring Appeal Collage  We know what you are going through, as much as any other person not living in your shoes can. 

We are with you.

So it makes us a little squeamish to ask you for a donation. We raise money in numerous ways so that we can continue to serve you without asking for too much too often. But occasionally we need to come to you for help.

Instead of me writing about why you should give to GRACE, can you take two minutes to watch the video below? It does not feature Sarah McLachlan singing over sad puppies but it does illustrate – over very uplifting music I might add – the work that we’ve done over the past year and the plans we have coming up.

And if, at the end of those two minutes, you feel compelled to give $100 or a recurring monthly donation of $10, well then we all win. 

Thank you.

Carlea Bauman
GRACE Executive Director

Watch Ken Burns’s Documentary on the History of Cancer, Adapted from “The Emperor of All Maladies” This Week on PBS

Starting tomorrow, Monday, 3/30, and running over three nights, our US-based audience can tune into their public broadcasting station (PBS) to watch a cancer documentary unlike one ever produced. Ken Burns, the definitive historian documentarian of our era, who has covered topics ranging from the American Civil War to Prohibition to Jazz to baseball, has produced what we should all expect will be the richest history of cancer ever portrayed, using the excellent Pulizer Prize-winning book “The Emperor of All Maladies: A Biography of Cancer” by Siddhartha Mukherjee as the leading source material.

Story of Cancer emperor of all maladies

This is a widely anticipated event throughout the cancer world.  The US National Cancer Institute (NCI) will be leading a “live tweeting” event throughout the broadcasting of each episode, about which you can learn more here.  I’ll be participating in that as well as upcoming commentary on Medscape that provides additional perspective from those of us living “the story of cancer”. For that matter, it’s likely that everyone in the audience is also part of that story, so you’re encouraged to watch and participate.

Though I haven’t yet seen the documentary, I’ve read the book and therefore have a fairly good idea of the breadth of what it will cover. In the wake of its presentation, I’ll offer my impressions of what we can expect as the biggest changes for the next several years, the present and future chapters of this ongoing story.  Here are my top 5 truly cancer world-changing events occurring right now, in real time, that will form the core of the next 10 years of cancer care:

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