Unprecedented conversation on cancer film

People are talking about the cancer film, “Emperor of Maladies,” produced by Ken Burns for the Public Broadcasting System, PBS. The three part series began Monday and ends tonight. What won’t end right away, however, is the talking about the film – especially the social media “talking” that marketing consultant Audun Utengen called “unprecedented.”

Will the talking itself make any changes in the public understanding of the science depicted? Will it bring a flood of phone calls to the Cancer Information Service, for example? Will people send donations for research? Tonight’s episode will highlight some very promising, but very expensive new therapies tailored to each patient’s immune system. The clash between what is possible and what is affordable will be clear.

Some doctors hope that public literacy improves. One of them is breast surgeon Deanna Attai, who is a professor at UCLA and has a practice in Burbank, Calif. She posted tweets during the nightly “live” event organized by the National Cancer Institute, NCI. Her comments were part of roughly 17,000 posts by the end of that first night on the social media platform Twitter.

Utengen and his company, Symplur, help keep track of the metrics on that “second screen” where the public talk about the movie.  You can see a running set of metrics and top 10 “influencers” at this link. Attai, who is also a reviewer for the nonprofit HealthNewsReview, wrote in an email that she wanted the film to get across “how far we’ve come.” She also believes that many people still see cancer as uniformly fatal, when that is no longer the reality.

In a strange parallel to the sort of sports banter that goes on during a March madness basketball game, people from Minnesota to Maine posted about the children with leukemia portrayed during the first episode, “Magic Bullets.” They wrote “poor Robert” during a historic section about the first child to receive chemotherapy in the 1940s, or poor Luca about a modern-era patient. They cheered and booed and shared when something on screen reminded them of a dead relative’s similar case. Some posted that they were turning away because the depictions of hospital beds and failures were too traumatizing.

#cancerfilm was on last night. Could not watch. Living the process and knowing the outcome is real enough.

— ILCmom (@ILCmom) March 31, 2015

 

Meanwhile, institutions such as Columbia Medicine, Mayo Clinic, and others, posted links related to their own research. The author of the book that inspired the film is Siddhartha Mukherjee who works at Columbia. They tweeted links to their own precision medicine efforts.

But in the film’s depiction of historic early cancer treatment failures, perhaps one of the most poignant reminders that could linger is we always believe in magic bullets, but as Forbes reporter Matthew Herper wrote about the documentary: “they have never been magic enough.” Herper wrote that he hopes the film imbues people with more context and skepticism. Even the newest bullets, such as immunotherapies filling news reports, may very well require years of refinement to be magic enough for a majority of patients. A noted leader in oncology, posting on twitter, expressed much the same sentiment on Monday evening.

  Alok Khorana is the director of the GI Malignancies program at the Cleveland Clinic, and the chair-elect of the giant American Society of Clinical Oncology or ASCO.  In his tweet, if you don’t know the abbreviations, “rad/surg” means radiation/surgery. To its credit, the film depicts many dashed hopes and failures. The first night also showed the backroom dealing and politics of raising money and changing public perceptions.

Attai echoed some of the same combination of measured optimism and a hope that people come away with a nuanced view of cancer’s challenge. “People don’t realize just how far we have to go – the more we learn, the more we realize how much we still don’t know. We’ve gotten to the point to be able to identify many of the complex molecular pathways, only to be surprised that when we find a drug that can block a pathway or mutation, cancer cells figure out how to bypass that block,” she wrote. There will be thousands of messages to parse and analyze in the weeks and months following the film’s airing. Dozens of individual television stations, such as Seattle’s KCTS-9, reported stories for their own website to dovetail with themes from the documentary. They held a preview event attended by an estimated 400 people at the city’s Town Hall. PBS invited viewers to post stories at a “story wall” online. Let’s give the last word to a patient, who is herself an advocate on the topic of lung cancer. Janet Freeman-Daily is currently NED (no evidence of disease) and is participating in a clinical trial based on the particular genetic signature of her lung cancer. She posted this Monday evening.


Note – Tomorrow (April 2) from 1-2 p.m. ET there is a live chat on twitter about immunotherapy led by the NCI

NOTE – Most of this post also appeared as a guest blog at Health News Review. The illustration at top is reprinted with permission from Symplur.

 

Small words = big ideas

Explaining science is a tricky business. You have to use the right words to be accurate, and you have to assume that your audience may never have heard those words. Recently, I was invited by the nonprofit Science on Tap to talk about simplifying language for an audience at the Pub at Third Place in Seattle. I also will give a talk at the Seattle Aquarium on some of the same ideas.

Maybe you are a newcomer to the idea of the Up Goer language, created by Randall Munroe. But I’ve written about it before, and so you can get some background on that language and why scientists use it by reading an earlier post of mine about Hair-Having animals and a later discussion based on a talk at Town Hall.

What I’d like to share here are some links for exploration on your own of Up Goer, as well as other ways that people have used to try to simplify science communication.

Here is an especially wonderful comment from Chris Rowan’s article linked below:

“Some might not see this as anything more than a gimmick, and argue that the constraints you are forced to work under are too severe; that by replacing jargon with a dense thicket of ‘simple’ words, you are just replacing one sort of linguistic complexity with another.” But, as he says, that’s missing the point.  Rewriting in Up Goer can bring something “quite profound.”

Scientific American magazine article

Text editor to use upgoer yourself

Original cartoon about Saturn V rocket

Blog from Forum on Science Ethics and Policy that sponsors UW contest. This contains excerpts from some of the wonderful entries by contestants who described their research using Up Goer.

Different gizmo for simplifying text

Alternate text editor – By Theo Sanderson who created Upgoer5, Upgoer6

In Theo’s version Six, your text gets analyzed so that you can use more than the 1,000 most common words in English, but the words are sorted by color according to where they fall on the most-common to least-common continuum.