Cancer – The Event and #CancerFilm

Linda Zercoe —  April 2, 2015 — 2 Comments
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The Ken Burns Event

Just like many millions of people, I spent the past three nights watching Ken Burns’ Cancer: The Emperor of All Maladies. This has been something I have been very excited about, have talked about, blogged about, posted, and tweeted since I learned that the Pulitzer-prize winning book by Dr. Siddhartha Mukherjee was going to be made into a documentary.

My impressions:

First of all, in my history and devotion to PBS, I have never seen as many sponsors listed before the program – some were stakeholders but most were not. I thought, ‘when is this going to end?’ But it also meant – this mattered.

Quick and dirty reactions:

As a human: emotional, scary, exciting, overwhelming, despair, hope, empathy for all parties – patients, caregivers, researchers, oncologists, nurses, pioneers, advocates – powerful. In memory of…at the end of Part 3, even powerful.

As a multiple cancer survivor: thrilled, hope, despair, triggered, detached, frustrated, hopeful, annoyed (to be explained), validated.

As a parent of a child with cancer/caregiver: very emotional when they were featuring any child or young adult, grief, sadness, anger.

As a couch critic: Extremely well done. It had a very good balance between the human side and the science. As expected there was the great telling of history while weaving science, research, societal issues and actual patients to move the narrative of story forward. Very well selected cancer patient stories to address multiple issues. Spot on one-way interviews with researchers and oncologists. It was great to have the author interviewed similarly throughout the three nights. I loved the hair!

I can’t imagine how hard this was to write concisely, pick who and how to tell the story. Nor can I imagine how hard it was for the producers, directors and film crew.

Criticisms:

Very U.S. centric. I wonder how the rest of the world felt? In my opinion too much airtime focused on smoking, now obesity – I think this perpetuates stigmas. Since “40% of the causes of cancers” have no known cause, I was left to wonder what percentage was caused by inherited cancers, or viral, asbestos and others known causes. This left me with the feeling that ‘you’ are the reason you got cancer but maybe that’s just me!

Disappointed in the amount of time focused on the genetics of cancer – very complicated – and much time on immunotherapy, the latest focus in treatment. While discoveries of BRCA were highlighted, no real discussion of genetic testing or counseling. No discussion of the politics of cancer other than presidential promises. No discussion of the economics of cancer other than family financial disaster and reduction of NCI funding. No discussion of the pivot point between government sponsored funding and the push to move more to private sector for research money and the changing stakes as we age. No action plan at the end to rally – like ‘Here are some ways that you can help…” I’m sure all these points were considered and since it was based on the book, these things were not included. It’s probably not fair to even expect these things.

The NCI and #CancerFilm Event

Welcome to the age of social media! While the film was airing, there was a Twitter event. Thankfully through Twitter, I hooked into the EST airing of the program each night. I live on the West Coast and had no way of watching the program earlier. But from the Tweets that were posting, using the #CancerFilm hashtag, I could follow along pretty well.

This part of the experience was also very exciting as the NCI, medical institutions, the Ken Burns team, journalists, bloggers, advocates, researchers, patients and interested parties tweeted their maximum 140 characters, then, retweeted, mentioned, favorited and followed.

This was a social media event! According to Symplur, a social media analytics company focused on healthcare, between 12 am 3/30/2015 to 12 am 4/2/2015 there were over 437 million views or impressions of this event, approximately 55K tweets, and12K participants.

Annoyingly, some people and companies used this as a time to promote and market themselves and their agenda. Others had scheduled tweets using an advanced screening of the film. Some paid to have their tweets promoted. And of course, by the middle of the third night, some posted pornography using the hot hashtag.

But the thrill of it was participating. Instantaneously connecting with people all over the country and in some cases the world. Getting reactions in real-time, hearing stories, sharing emotions as we all rode the roller coaster of the 6 hour event. By the third night, in my estimation between 40 – 75 tweets were coming into my feed per second. It became exhausting to keep up.

Then each night, finally the show aired on the West Coast. Living in the hub of technology, near Silicon Valley, I wondered – where was everyone? Were they working late, cooling the servers of data flow, stuck in traffic? Or were they plugged into the latest thing I obviously don’t know about.

There were plenty of people engaged, to be sure. I have to give special credit to UCSF, OHSU Knight Cancer Center, the NCI, and to Sutter Health for ‘live tweeting’ on PST. I especially thank Sutter for holding a live question and answer session under #CancerFilmQA for the three nights. At times, especially the third night, minutes would go by with no new tweets during the show and I had to check if something was wrong with my computer. Obviously most people on the ‘left coast’ were focused on living in the moment and watching the show. Being originally from the East Coast, I was multi-tasking like every else there had and then they were sleeping!

One tweeter called the West Coast social engagement ‘tepid’ one night, questioning the lack of presence of mostly southern California medical institutions and then it was ‘deafeningly quiet’ the third night. I replied to that tweet by tweeting that it was a ‘snore compared to the east coast and where is Stanford?’ Oops, that replied got MT or mentioned on the feed. I’m still learning the rules of the game here. Many companies have social media engagement teams and believe me, you can tell who did.

But my top favorite things about this social event were 1.) The patient/caregiver/survivor reactions; 2.) All the doctors, researchers and cancer support groups tweets; 3.) The NCI, sending out incredible connections to resources about each topic with pictures as they were happening; 4.) The unified and powerful force of the lung cancer community; 5.) For the medical institutions that were the most helpful in the information they provided though their tweets, my top picks were Sloan Kettering, MD Anderson, Columbia and UCSF Cancer center!

I have to ‘unplug’ a bit. But I would love to hear your reactions to the program!

I tweet @lindazercoe and @thecancerian1

 

(Image credit: 123RF.com Image ID : 9025699, Copyright : studiom1)

 

2 responses to Cancer – The Event and #CancerFilm

  1. I finished the book version of The Emperor of All Maladies earlier this year. Mukherjee really does succeed in personifying cancer (as he intended to do so), illustrating its position as humanity’s perennial nemesis while explaining with the perfect level of technicality why effective treatments prove to be so tantalizingly elusive. From your review, it appears like the documentary excels in that regard as well. Though I find it difficult to believe that it does not spend much time discussing the genetics of cancer given how the field has really come to the forefront of medicine of the past few years with genetic testing, gene therapy, and personalized medicine emerging on the scene. I hope to find time to watch Ken Burn’s version this week.

    • Linda Zercoe

      Hi JP,

      Welcome back! Some people might think they spent enough time on the genetics of cancer but as you know it is a difficult area to understand and new information is emerging daily. It would be hard to present enough in such a short time AND it was presented as complicated, complicated to understand, to unravel and to solve. I would love to hear what you think after you watch the show. L

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