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.

 

Tiny invisible bosses

“We are bulky ornaments on life’s skin,

riding the surface, only dimly aware

of the microscopic multitudes

that make up the rest of the body,”

From the book, The Forest Unseen, by David Haskell.

Sometimes the scale of things makes all the difference. My microbes are invisible to my eyes, but increasingly important to how I “see” my own health and our collective public health.

My gradual change in thinking began a few years ago when I donated information from my home and my own body to two different research projects. One was the Ubiome project, which is mapping the microbes in thousands of human guts. The other was the Wild Life of our Homes project, which is mapping the microbes of homes in all 50 states in the United States.

For the Wild Life project, I used a swab that looked like an overgrown Q-tip to take samples from doorways and my kitchen counters and my pillow. I mailed that swab in a vial to the researchers. For the Ubiome project, I took a sample of feces from my toilet paper and sent that. In each case, the samples eventually were sequenced. A lab checked a portion of the RNA sequences in the samples to identify the microbes.

Do the microbes in my own gut make me healthy? Is the ecosystem of my gut different than my husband’s? Each project is asking a question about the vast largely uncharted multitudes of microbes that live in and on our bodies, and in our homes. I wrote in  earlier blog post about these projects.

Donating these microbes made me curious. Learning more about my own skin – literally what lives on my skin – made me wonder more and more. Living in Seattle, I am surrounded by science that probes what is known as “big data.” Our town is especially full of scientists who specialize in mind-bogglingly  large sets of data, including terabytes of information from the genetic sequences of thousands of bacteria living in the human gut, to name one example. These data scientists have to invent their own education, because typical classes don’t serve them. I met some of them when writing a story for Seattle Business magazine.

Many microbiologists will tell you – the microbes don’t just outnumber us on Earth, they add up to more biomass than all the terrestrial mammals of earth added together.  While the comparison may seem unfair, the point is that we should not overlook the microscopic world of our planet.  Our indifference to these creatures because of their scale is exactly what author David Haskell in the quote above eloquently points out is blindness.

During a recent conference of citizen scientists, I had reason to think about this blindness. Our session explained how people donate microbes  for a variety of research projects. The participation itself, I would argue, changes the way you look at the microbes. But it also changes the way you think about scale. You appreciate that the collective action of millions of small creatures may influence bulky organisms like ourselves. In a similar way, going to a conference can make one appreciate the collective ecosystem of thousands of citizens. Might we make big changes happen?

During the conference, many of us talked about whether people who volunteer to collect data for science emerge from the experience with new outlooks. There are more and more people involved in citizen science, so it is worth wondering whether they will vote or spend money differently because of it.

What may seem like an abstract discussion could save the life of someone you love, if they spend time in a hospital and come home with an infection from an organism known as clostridium difficile. These organisms can make people terribly sick and transplants of gut bacteria (in fecal matter) from healthy people have cured some of those patients. Recently, the Centers for Disease Control released new statistics suggesting that nearly half-a-million Americans are  infected per year.

Thinking differently about scale is one reason that pioneers thought of the fecal transplants to treat patients with C. diff infections. While we don’t understand enough to define a “healthy” microbiome, the change in thinking is mammoth. Most people share some similarities within their families of their gut microbiome and there’s some evidence we acquire our microbiome from our Mom.  Many questions spin out from this change in thinking.

One day when washing some carrots from a local farm, I wondered if the microbes in the dirt I was washing away might actually hold more benefit for me than the carrots themselves. At my local gym, I wondered if the reason people who exercise in groups seem to live longer could be related to to the microbe sharing that happens when we share mats and weights. I’m not suggesting either of these ideas is true but just pointing out that once you view the microbes as potential actors in your health, it makes you see differently.

Scientists around the world are now asking questions about microbial life in relation to human health, as well as the ecological health of our built environment and our wild places. They are demonstrating a new way to “see” questions about health. There is research on the relation of gut health to autism, obesity, diabetes and depression, just to give some examples.

As our knowledge about microbes increases, we may see our world very differently. We may be minor players in a game driven partly by these microscopic actors. Stay tuned for more posts on this topic. I welcome your questions.

Let me leave you with a wonderful 25-minute video by  microbiome reseacher,  Jonathan Eisen, who presented in March at a meeting called the Future of Genomic Medicine.  Sorry that the video begins with a short advertisement.

Image above used with permission of the Pacific Northwest National Labs. Taken by Janine Hutchison. Green is lactobacillus reuteri, purple is collagen microsphere, and brown is intestinal cell.

The hairball of citizen science

The hairball is jargon for data scientists. It means a special graphic that illustrates intersections.

When I visited the Citizen Science Association’s first conference in San Jose, Calif., in February, it felt like a living hairball. Every one of the 600 people was already a networker, an accelerator, or somehow a person forced by curiosity to ask other people to help assemble science answers.

There were birders (Loon counters from Maine), microbiologists, physicists and policy wonks.  If some of you don’t know the delicious explosion of citizen science, please detour now to read about games of proteins, games of neuron-mapping, games of whale song matching and thousands of other projects here.

But like catching lightning bugs and magic in a bottle, there were people who thought the very labeling and defining of citizen science might break its tender wings. This first-ever conference tried to find the most common ground between projects and hoped that sharing best practices (and sharing conference rooms) would save some people time and trouble finding the right methods.

I don’t have answers for any of the wonderfully provocative questions I heard in San Jose. But I came home from #citsci2015 (as tagged on Twitter) newly impressed with the collective power of citizens. My own panel about microbiology included two projects where I donated samples: The Wild Life of Our Homes and Ubiome.

Our panel included California high-school science teacher, Bethany Dixon, DIY biology volunteer Patrik d’Haeseleer, David Coil and  Jenna Lang, both of the Eisen Lab at the University of California at Davis, Adam Robbins-Pianka of American Gut and Holly Menninger of Your Wild Life at  North Carolina State University.  Collectively, we bonded most over what  is not known about microbial ecosystems rather than what is known.

Studying the ecosystems that microbes create has been compared to discovering a new Amazon rain forest. It is tantalizing to find out that obese people and diabetic people have different microbes in their guts, but we are far from understanding why.  The microbiomes of individual houses differ, as my panel member Menninger is studying, but we may be years from understanding how and why. We were a panel of people at peace with puzzling complexity.

Imagine every one of the thousands of different microscopic creatures living in your gut playing an unknown and changing role in your life and your health. That’s quite a hairball, and untangling it will take years. I’m very glad to have met the people at #citsci2015 as passengers with me on this journey.

If you are pursuing citizen science in some way, please let me know. I will continue writing about it here.