Lessons from #CancerFilm on “second screen”

For three nights this Spring, an unusual set of fireworks exploded across the social media landscape with implications for public discussions of health, particularly for health care professionals whose work includes crafting messages for patients.

An estimated 746 doctors joined in a twitter chat with the hashtag #cancerfilm in an extended conversation with more than 500 self-described patients, as well as about 12,000 other people who didn’t fit either of those labels (but fit 13 other categories.) This three-night, multiplayer dialogue began March 31 and created an “unprecedented” event according to one data junkie, Audun Utengen, of Symplur, LLC. Utengen runs the site www.symplur.com, which provides analytics on healthcare related hashtags.

The jury is still out on whether others will imitate this episode of what is called the “second screen” phenomena in health care.  Sports and music fans already tweet comments to each other while athletes and musicians are performing. “Did you see that goal?” But what happened on the three consecutive nights – beginning March 31, was a formal invitation by the US National Cancer Institute (and 18 partner research organizations) for the public to “comment” while watching a public television documentary entitled, “The Emperor of All Maladies,” about cancer.

“This opens up a whole new area for conversation in health care,” Utengen said in an interview. “This was an explosion of people talking about a disease.”

Emperor was a six-hour major television event on the US Public Broadcasting System, PBS, presented by documentary filmmaker Ken Burns, in partnership with WETA, based on the 2010 Pulitzer Prize-winning book by Siddhartha Mukherjee.

Cancer – in the documentary – was portrayed in lethal reality, complete with historic explanations of mistaken ideas and misguided treatments and days when wards full of children faced almost certain death.  Some of those on Twitter literally wrote “I’m turning it off now” because they said it was too difficult to watch. Utengen himself, whose family has been touched by pancreatic cancer, said it was not easy to see some images.

But the authenticity pleased some of the patients watching, who tweeted things like, “That’s exactly how I felt during chemotherapy” or “I remember losing my hair.”

For those who wish to study it, the entire transcript of #cancerfilm is available here.  You must scroll to the bottom to set parameters for the time section you wish to read. One social scientist who has been studying social media said parsing the importance from of an event like this is a statistical nightmare. Devin Gaffney is a doctoral student at Northeastern University in Boston, who has studied social media’s role in political uprisings, for example.

He said linking “online” conversation to offline behavior for #cancerfilm is tricky. “I think very likely there is a real link there – attention online will likely lead to some degree of attention (and donations, and attitudinal shifts, and improved science literacy), but I don’t think it happens in a way that we can directly quantifiably measure.” Surveys done months later might be able to pick up an impact, he explained.

During #cancerfilm some researchers posted inspiration and resolve, and even humility when facing new discoveries.  Big pharmaceutical companies, including Bristol-Myers Squibb and Celgene, were also tweeting. They were joined by research institutes, such as Memorial Sloan-Kettering and University of California at San Francisco, UCSF. Some of the tweeting provided information on therapies that were discussed inside the documentary itself.

The presence of research institutes tweeting about themselves drew this sharp rebuke from journalist and science communications expert Paul Raeburn.

Other critics of the conversation pointed to a lack of discussion of prevention, and what some called too much hype about new avenues of treatment, especially immunotherapy.

Peter Garrett is the director of communications for NCI, and he saw the six hours of the documentary as an opportunity for outreach.  The film was a rare platform for putting information about cancer into the stream of discussion exactly while questions emerged for the audience watching, he explained in a phone interview.

The NCI worked diligently to prepare and lead the event and have materials ready to post, Garrett said. Utengen counted 35 federal agencies tweeting during the event. *

A Platform for Online Patient Health Care Communities

Media relations expert Greg Matthews* believes the social media explosion of #cancerfilm will inspire others to attempt to re-create it.  “Anyone who saw the impact that #cancerfilm had on the online health ecosystem is going to be building on that model – it was phenomenally successful,” he wrote in an email.

Matthews works for W20 Group, a marketing consulting company based in Austin, Texas, that publishes detailed reports on social media in health care. Their “Social Oncology Report,” based on 2014 data was published in May.

What made the explosion of conversation so big, Matthews said, was the fertile ground already plowed by the myriad health-care patient communities on twitter. These communities fueled the second-screen event, because they already had online fluency about cancer, he said.

If you aren’t familiar, these are communities often run by patients where people gather weekly to talk about diseases during a certain time slot.  Two very active chats are #lcsm and #bcsm. Lung Cancer Social Media (lcsm) includes both doctors and patients and is frequently co-moderated by Seattle patient Janet Freeman-Daily. The breast cancer social media chat was co-founded by a surgeon, Deanna Attai of Burbank, Calif. In network mapping done by researchers of social media, Freeman-Daily and Attai, appear “central” to discussions in their respective disease areas.

During the May conference of the American Society of Clinical Oncology** in Chicago, doctors presented research about how some of these hashtags may operate in influencing patient decision-making, but the research is not published yet.

What Matthews finds interesting is how “chat” communities are changing and becoming more diverse, including patients, providers, advocates, researchers and health policy wonks. His company tracks what he calls more than 500,000 “online identities” related to health care internationally.  For his clients, which can include physicians, hospitals, pharmaceutical companies and others, he gathers analytics on how their target audiences behave online, and where the clients may reach a given audience with a message.

“I get the point of critics,” he explained, who see health-care social media as just one more place for marketing of products, devices and branding institutions.  “I understand the skepticism. But we know that emotion is a big part of health, and hope is one of the most powerful emotions.”

Hope is a frequent theme of disease-related discussions. Freeman-Daily, for example, is one of the most prominent patient influencers on social media about lung cancer. Her message is: even if you are diagnosed with advanced cancer and given very few treatment options, there may be a clinical trial you could enter.

In her own case, she is currently not showing any evidence of disease, after finding a trial specifically aimed at her cancer’s genomic signature and receiving chemotherapy though a Colorado laboratory.

She is also fighting stigma (as she explains in video link) that she blames on people mistakenly believing this cancer is only suffered by those who are smokers. An estimated 10-15 percent of lung cancer is diagnosed in “never smokers.”

One of Freeman-Daily’s comments during #cancerfilm reflected some of what Matthews observed. Hope is precious.

 

Nobody seems able to explain what the explosion of conversation could yield in terms of a permanent impact. But the fireworks leave a lingering smoke behind. Someone may learn how to read the signal in that noise.

This blog first appeared at Public Library of Science, PLOS. Reprinted here with permission.

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.

 

Juno sharpens Seattle “immune” focus

 Photo by Bo Jungmayer/Used with permission by FHCRC.

People in Seattle are going to be reading a lot more about t-cells as the roll-out continues for Juno Therapeutics, one of the biggest launches of a new biotech company in history.

Juno aims to harness the body’s own immune system cells, known as t-cells, to fight cancer. For those of us who’ve been writing about oncology for decades, the notion of “harnessing the immune system” is not new.  But Juno has a powerful combination of big-name research institutions and about $120 million to pursue its newest version of targeted immunotherapy. For some people, Juno’s genesis is evidence of a strong culture of immune science and skill unique to Seattle.

Two scientists from Florida offered to help us see this in context. Immunotherapy experts, Jan Moreb and Lung-ji Chang, both of the University of Florida, are not connected financially to Juno or a similar program at the University of Pennsylvania.

Both of them believe the approach could be a revolutionary advance and deserves much of the excitement it has generated.  (Just one side note – Juno joined a lawsuit in December over the “rights” to certain technology. )

Moreb and Chang have years of research experience in the immunotherapy realm, including experience with what is called CAR (chimeric antigen receptor) T systems, which are part of the Juno toolbox. Juno’s therapy is based on science from Memorial Sloan-Kettering Cancer Center, Fred Hutchinson Cancer Research Center and Seattle Children’s Research Institute.

“I believe this is a great thing,” Moreb said. “Even if not all patients respond to the therapy, it will still be a great alternative for some patients.” The CAR-T therapies were widely discussed at the American Society of Hematology or ASH conference in December. You can read a comprehensive report here from the National Cancer Institute.

To understand it better, you can watch a video where one of the primary scientists, Phil Greenberg of the Hutch, explains immunotherapy. He begins talking about t-cells at 17 minutes in during this hour-long  video.  If you want an extreme simplified version, try  this from Sloan-Kettering.

To summarize, a patient has some of their own t-lymphocytes or t-cells removed from their blood. The cells are treated in a laboratory in a way that alerts these cells to the presence of cancer in the patient. The t-cell will hunt down cancer cells looking for the antigen “tag” on the outside of the cancer cell and kill those cells with that specific antigen.

In comparison to other immunotherapies, the CAR t-cell system is designed to have better targeting for the best antigen “tag” and more efficient ways of engineering in the lab so the t-cells get their instructions quickly.

One of Juno’s executives, Hans Bishop. worked for Seattle-based Dendreon on a different immunotherapy, Provenge. While the method is different, Provenge requires removal of a patient’s blood, treatment of that in the lab, and returning that to the patient.  At Juno, Bishop will be faced with smoothing the patient-lab-patient pathway.

Rolling this sort of therapy out nationwide to the thousands of patients that Juno says it wishes to reach will be tricky, Moreb explained.  Writers at this blog explain some of the challenge. Chang said that everyone who is treating patients hopes the price of such therapy – even if it is very high at first – will be able to come down with efficiency.

In all the results of clinical trials that have been released so far, there have been some patients who don’t respond. As Chang asked, “Why didn’t those patients respond?” Until there are larger numbers of patients treated, the non-responder mystery will remain. Stay tuned.