29 January 2013

ScienceOnline 2013

This week I'm heading down to the Research Triangle—aka where I was born and where I returned to go to college—for ScienceOnline 2013. In short, it is a gathering of 450 people who love science and particularly love writing about science. It may well be the nerdiest (said inclusively and with endearment), smartest, and most nitpicky collection of conference goers of which I've ever been a part. I'm thrilled.

I'm fortunate to be one of only 28 to make it on the list for the Duke Lemur Center tour on Wednesday afternoon. The Duke Lemur Center, established in 1966, is the world’s largest sanctuary for rare and endangered prosimian primates. There are about 250 animals, including 233 lemurs encompassing 15 species, along with lorises from India and Southeast Asia and bushbabies from Africa. Speaking of babies, there's a new one. And we get to meet her.

As the tweets (#scio13) have increased in number as the conference approaches, there have been mentions of candy poker games, glitter, an open mic night, and repeated references to the hotel bar. I repeat—I'm thrilled... if not a little bit wary.

Sessions officially start on Thursday. Here's how my schedule of choice looks:

Session 1A: Narrative: What is it? How science writers use it?
T. Delene Beeland and David Dobbs
Thurs, Jan 31, 10:30-11:30 am, Room 3

Description: We writers like to toss around the term "narrative," but what we mean isn't always clear. Discourse theory tells us that narrative is one of four rhetorical modes, the others being exposition, argumentation, and description. Webster calls narrative "a representation … of an event or story" — which reflects common sense but passes the buck. For what is a story? Most would agree that The Immortal Life of Henrietta Lacks is a story — two or three, in fact, woven into a single fine narrative. Yet we might argue over whether, say, Richard Dawkins' brilliant description of the rise of the "replicator" (the first gene) also constitutes a narrative; or whether a narrative requires people; or whether narrative can be driven mainly by ideas. In this session we hope to demystify what narrative is so we can better discuss how to create it. First we'll spend a few minutes trying to define narrative in a way that broadens but firms the concept into something actionable. Then we'll talk practice. Why or when should a writer/journalist use narrative? How does one transform a topic into a story? How do we conceive, report, structure, and write to enliven this story. How do we create a sense of movement through time, of tensions raised and (maybe) resolved? How must we do our reporting to turn an abstract idea into an earthy narrative? Drawing on a few prime examples and the experience and perspectives of the moderators and audience, we'll aim to firm up a working definition of narrative and send everyone out with a list of practices and skills needed to create one. Hashtag: #ScioStory. Freelancer T. Delene Beeland took the narrative challenge in first book, The Secret World of Red Wolves, to be published in spring 2013. David Dobbs tilts narrative in his pieces for the New York Times, National Geographic, and other magazines, and in his book-in-progress The Orchid and the Dandelion.

Session 2B: Scientific storytelling: Using personal narrative to communicate science
David Manly and Jeanne Garbarino
Thurs, Jan 31, Noon-1:00 pm, Room 4 

Description: The famous American General, Douglas MacArthur said that "rules are mostly made to be broken and are too lazy for the lazy to hide behind." The same can be said for writing and blogging. There are a whole host of "rules" that writers tend to shift to, and they get drilled into you by the news you read, magazines you flip through and classes you take in school - have a central argument or thesis, pretend the reader knows nothing, use an active voice and avoid the first person. But why? Why are such restrictions taught in journalism school and pounded into us? Humans are a social species and enjoy telling and hearing a good story, which is how history was first shared. Science can be boring to some people, but if framed within a personal story and made relatable, it can have much more of an impact. This session, proposed and moderated by David Manly and Jeanne Garbarino, will delve into the often neglected writing style and demonstrate how to use personal experiences to make your posts and articles more engaging, engrossing and exciting for the reader. The official hashtag for the session will be #MySciStory.


- How can you achieve balance in a personal science narrative and why isn't it used more? #MySciStory

- Why are personal narratives frowned upon in science storytelling? #MySciStory

- How can you frame your experiences in the context of a narrative that anyone can enjoy? #MySciStory


Here are some suggestions of first-person narrative journalism out together by the moderators, David Manly and Jeanne Garbarino.

Some of these will be discussed during our session, but will primarily be used as examples to the different styles of writing a first-person narrative.

David Dobbs describing just how strange (and fallible) his memory can be - http://www.wired.com/wiredscience/2012/05/the-hole-in-my-hippocampus/

Deborah Blum on the perils of using first-person narrative journalism - http://ksj.mit.edu/tracker/2013/01/science-writing-and-me-me-me-me

The posts that inspired Deborah's post, by Gary Schwitzer, can be found here and here

Maryn McKenna on becoming part of her own food poisoning story - http://www.wired.com/wiredscience/2012/10/salmo-peanut-butter/

David Manly on the difficulties associated with establishing a separate identity as an identical twin - http://blogs.scientificamerican.com/guest-blog/2011/03/15/mirror-images-twins-and-identity/

Jeanne Garbarino on her experiences and revelations with during her pregnancy - http://www.doublexscience.org/2011/12/pregnancy-101-on-cervical-mucus-plug.html 

Session 3C: Into the unknown: What we don't know, and how to talk about it
Maggie Koerth-Baker and Maryn McKenna
Thurs, Jan 31, 2:30-3:30 pm, Room 6 

Description: Uncertainty is something scientists take for granted. There's always a possibility that your results could be wrong. There's always a possibility that the situation will change. There's always questions you can't answer yet, and always details still undelved. Trouble is, the public doesn't know that. For many people, results are facts and unknowns are failures (or, at least, good reasons to mistrust the experts). This disconnect between what science actually is and what the general public believes it to be creates serious communication problems, and makes it hard for people to know how to apply scientific data -- both in their personal lives, and in public policy. To bridge that gap, bloggers and journalists need to do a better job of building an understanding of uncertainty into our work. But how? Come to this session to hear our stories, share yours, and help curate a list of tips, tricks, and resources that everyone can use. Proposed hashtag: #SciOUnknown


- There's stuff we know. Stuff we don't know. And stuff we don't know we don't know. How do you talk about unknown unknowns in science?

- Science is uncertain. Do you think the public understands that? Share your thoughts on what we don't know, and how to talk about it. #Scio13

Session 4D: Lightwaves and brainbows: Seductive visual metaphors at the intersection of science, language and art
Cedar Riener and Michele Banks
Thurs, Jan 31, 4:00-5:00pm, Room 7a 

Description: Visual metaphors are crucial to science communication, both among scientists and between science communicators and the public. To start with a metaphor, they provide a familiar peg on which to hang new information. A well-chosen visual metaphor (particles as billiard balls, benzene as a snake eating its tail) can provide an instant jolt of recognition and understanding to a complex concept, while a badly-chosen one can complicate and obscure. This session will explore the best and worst, the pros and cons of devising and deploying visual metaphors for science. How do these cases make the science more compelling? For example, how do pictures of brain areas “lighting up” give us the feeling that we are peering inside the brain? How do these cases perpetuate errors or biases? In the case of brains lighting up, the color of the map of the brain is in comparison to a baseline. Most of your brain is lit up, most of the time. The moderators are a cognitive psychologist with an interest in visual illusions and the history of psychology and an artist who turns depictions of structures into amazing works of art. We’ll kick off with a little bit of science about visual perception and image processing, then we’ll talk about some good, bad and confounding examples of visual metaphors, and then open up to discussion.


- When does a visual metaphor in science clarify and when does it obscure/confuse?

- What makes a good visual metaphor in science?

- What’s your favorite visual science metaphor? Early candidates: benzene ring, brain maps, neurons as wires, particles as billiard balls?

- What visual metaphor in science is the biggest cliché?

- What’s most important in a sci metaphor: originality, accuracy or familiarity?

Session 5E: How to make sure you're being appropriately skeptical when covering scientific and medical studies
Ivan Oransky and Tara Smith
Fri, Feb 1, 10:30-11:30 am, Room 7b 

Description: When it comes to writing about health and medicine, we all want to be the smartest kid in the room, but no one likes a show off, and scientists don't always like to hear their work criticized. Explore how to find flaws in studies, be skeptical, and include important context that separates you from scaremongerers (OMG this new bug is going to kill us all!) and practitioners of "gee-whiz" (this will be on the market in two years and cure diabetes!). And learn how to do that so the scientists who read your stuff end up with more respect for you, not less.


- What are some mistakes veteran science writers learned from when first writing about medical studies?

- How do you ask the right questions about studies without being an expert in everything?

- How do you write critically but respectfully about studies so you don't alienate authors?

- How do you find a biostatistician to keep in your back pocket?

Some links to get the ball rolling, and that we'll discuss:

HealthNewsReview.org's criteria for what should go into a story about a medical study

Similarly, 7 criteria to think about when reading medical studies

Why criticizing the work is a good idea, but making it personal or labeling something "fraud" isn't

How to avoid "he said, she said" science journalism

Cutting through the hype to find smart stories

Session 6B: Citizen scientists and ethical research (part II)
Kelly Hills and Dr. Judy Stone
Fri, Feb 1, 2:30-3:30 pm, Room 4

Description: Many ethical issues arise while conducting research. What happens when citizen scientists start doing research outside the scope of institutional review boards, medical ethical committees or institutional animal care and use committees? While there is a long history of researchers experimenting on themselves, there is an equally long history of vulnerable groups being taken advantaged of without proper ethical oversight. How does this history and experience dovetail with citizen scientists and researchers who are not a part of this narrative history, and may not have the experience - or ethical self-regulation - to know where to draw a line in the proverbial sand? While there are standards for traditional medical research - still too frequently violated - how are they, or should they, be applied to citizen science research? Join us as we discuss the historical context of ethical research and examine contemporary influential issues, and how this affects and applies to citizen science.


- Who provides ethical oversight for the maker/DIY bio culture? (Who does, and who should? Are they the same people?)

- Who should be responsible for insuring that research undertaken by non-institutionally affiliated researchers is ethical?

- Is there a need for a citizens ethicist group, to provide oversight in to research?

- What are the most effective and efficient ways for a citizen scientist to educate herself about ethical regulations and issues?

- Are you obligated to tell research subjects that you may profit from their tissues and other contributions?

- Many consumers felt misled by 23andMe's consent form [see Legal Genealogist & The Scientist]; how does this affect disclosure needs?

- Ownership of research is contentious in trad research; how should it be handled in citizen groups? [See, for example, this styrofoam example.]

- What does research - and consent - mean to different populations/communities?

- Should crowd-sourced projects be required to seek IRB approval?

- Does placing ethical constraints on DIYbio/art hamper creativity?

Session 7C: Explanatory journalism, &%$£ yeah!
Mark Henderson and Ed Yong
Fri, Feb 1, 4:00-5:00 pm, Room 6

Description: Many discussions of science journalism are increasingly focusing on the need for investigative reporting -- deep digging that exposes something someone wants to hide. This is important. But it isn't the only type of science writing with value. Is really good explanatory science writing becoming a poor relation here? You don't have to expose a scandal to create original, well-crafted content that has real value to the reader/viewer/listener. Sometimes, to explain something really well is enough. Yet with newsrooms cutting back, and focusing the limited resources they have for off-diary research on investigation, good explanation of science for general audiences is taking a back seat. It's time consuming and expensive, but doesn't either carry the kudos or attract the eyeballs that makes news organisations take notice.

The Wellcome Trust (where Mark is Head of Communications) is about to launch an online project that will commission high-quality explanatory content (including infographics, animation, video as well as long-form writing) about the areas of science the Trust funds -- but not restricted to its actual scientists. An alpha or beta version of the site is likely to launch soon after Scio 13. Meanwhile, Ed has been writing a column for the BBC that tries to take a more detailed explanatory look at the more far-flung promises of typical news reports. He's also found that his explainers, like an oxytocin piece for Slate, and an ENCODE mega-post on his own blog, have been some of his most popular work this year.

Ed and Mark will argue for the value of explanatory content, and explore what makes it good. The questions that we're particularly interested in discussing are:

1) What makes good explanatory science writing? How do you make explainers utterly compelling without doing a turgid Q&A?

2) Who's doing explanatory journalism and commissioining it? How do you as a writer get commissioned to write it?

Here's a list of some explainers from the last year:

- Ian Sample's ping-pong video about the Higgs boson and PhDComics' strip about the same- Rose Eveleth's animation about invisibility cloaks

- Carl Zimmer on norovirus - a study in puked perfection

- Ed Yong on the dodgy science of oxytocin

Session 8E: 24/7 Health: The role of mobile technology in healthcare
Pascale Lane and Peter Lipson
Sat, Feb 2, 10:30-11:30 am, Room 7b

Note: Peter Lipson isn't going to make it to the conference... we'll see what happens to this session.

Description: As smart phones and tablets permeate the market, many people carry a potential all-knowing personal assistant that can help them learn about health, remember their medications, and track their diet and physical activity. Apps now bring HIPPAA compliant connections to providers and medical information. On the other side, providers have access to more information than ever before. How can we maximize these systems to increase health? What new models can be developed to help people and providers? Hashtag: #24/7Health


- Can mobile technology improve health?

- What can we do with massive amounts of individual data?

- What new models can bring us better health on an individual and population level?

Session 9C: How do you actually get a book written?
Katherine Sharpe and Maria Konnikova
Sat, Feb 2, Noon-1:00 pm, Room 6

Description: So, you have a great idea for a book. Or at least you think you do. But is it a book, or just another article? How can you tell the difference? And once you do, how do you go from the idea to the actual book? What's the process like, and how is it different from every other writing assignment you've taken on? How do you take a massive amount of information and turn it into something not only readable but a joy to read? And how do you stay sane—and excited—in the process? Writing a book can be one of the most rewarding things you’ll ever do. But it can also pose a challenge to your skills and your peace of mind?? Veteran and aspiring authors are invited to join Katherine Sharpe, author of “Coming of Age on Zoloft,” and Maria Konnikova, author of “Mastermind: How to Think Like Sherlock Holmes,” in a discussion of how to tackle writing’s ultimate long distance event.


- How do you know which idea is “the one”?

- What makes a book different from a long article?

- How do you know if you’re in trouble—and what do you do if you are?

- What are the resources available to you, and when is the right time to use them?

- What do you need to know about writing a book proposal?

- What should you know going in? / What do you wish you'd known going in?

- Authors in the house: what would you do differently next time?

- How can you get the most out of your relationship with your editor?

- How do you know when to stop researching and start writing (or should you do them at the same time)?

- A happy writer is a good writer? (How do you take care of yourself under pressure?)

- How do you balance writing with your other commitments?

- What do you do if writing your book isn't enough to pay the bills?

- I delivered my first pass manuscript. Now what?

Session 10A: Life in the venn - What happens when you're forced to wear many hats?
Mireya Mayor and Ed Yong
Sat, Feb 2, 2:30-3:30 pm, Room 3 

Description: Increasingly, people in the science world seem to play multiple roles. Some are scientists and journalists. Others are journalists and PIOs. Some teach with one hand, research with the other, and blog with their faces. How do we handle the tensions between roles that can have conflicting priorities and values, and how do we partition our different identities online?

27 January 2013

Learning How To Take No For An Answer

Being an advocate is hard. 

In public, we celebrate the victories. We laud partnerships, and announce accomplishments. We mark honors, and unveil new opportunities. What we don't do is draw attention to our failures. 

For every email sent, there are five more unanswered. For every sponsor whose logo bedecks the ballroom banner, there are ten more who said no. For every grant awarded, there are twenty more for which one was unqualified to apply or deemed unworthy. For every yes, there are a hundred replies no.

To fight for a cause is to be beleaguered by it, for even successes beget problems. To fight for a cause is to work one's self out of a job, for true success means that one no longer is needed. 

Confession: sometimes I wonder what it would be like if I just stopped. What if I went off the radar, stopped pushing, got quiet, took up sewing instead? I could cancel all my doctor's appointments, quit taking my medications, move out even further into the country, write with pen and paper, and see the world from a perspective no farther than the tip of my nose. There would be handmade afghans, and kittens, and tomatoes, and a screen door slamming shut. Life would be as Southern as Eudora Welty, and one day years down the line I'd fall asleep in a lawn chair in the sun and just not wake up.

Or I'd get all bunkered up in a holler somewhere and just be lonely as sin, while wishing I could do more with my life than just waste away into a shell of a bitter old shrew. Either way. I'm not much good at happy mediums. 

The point is this: the next time you are dealing with someone who doesn't have to do what they're doing, who is giving his or her own time to a cause, who is asking you to consider helping—think just a little longer before you answer. Some people say, "Well, we just get asked to help all the time, and we can't say yes to them all." Granted, that may well be true. Consider though what you're being asked for and by whom. Consider the relative magnitude of what you'll give and what those in need will get. And above all else, approach those who are fighting for a cause with an attitude of respect and a willingness to problem solve—perhaps if you can't help you know someone who can.

14 January 2013

Medical Research and the Gaps Between Cause, Treatment, and Cure

I am sick, and I am tired.
I am sick of being an anomaly.
I am tired of fighting against my body.
I am sick of reading headlines about unnecessary, yet well-funded, research.
I am tired of not being considered a sound research investment.
I am sick of competing for attention.
I am tired of being sent home without an answer.
I am sick of doctors who think they know more about a disease than the patients who live with it.
I am tired of doctors who know nothing about my disease at all.
I am sick of money being wasted collecting data that is too vague to provide answers.
I am tired of feeling as though any true breakthroughs will have to come from the patient community.

Every day fibromuscular dysplasia patients connect with one another in a Facebook group facilitated by the international, nonprofit organization FMD Chat, of which I am founder. Every day this group of patients checks in on one another. Every day group members discuss how they're feeling—physically and emotionally. Every day we share test results.

Every day we wonder why no doctor seems more interested in the similarities that are found in our stories. Every day we hope that rather than doctors calculating the percent of patients reporting certain vascular events or peering at biopsies and DNA samples that a doctor will ask us how we feel. Every day we hope for a treatment—much less a cure. Every day we are disappointed.

It grows more difficult not to become bitter.

Fibromuscular dysplasia (FMD) is a noninflammatory, nonatherosclerotic arterial disease that is most commonly seen in women. It may present at any age, but is more commonly discovered when the patient is between the ages of 20 and 60 years old. Just nearly a year ago, on January 30, 2012, I wrote about a FMD patient registry—which so far has cost more than $180,000—and at the time had yet to reveal any information that was necessarily "news" to the medical or patient community—at least those who were familiar with the disease. Of the first 339 patients enrolled, patients reported high blood pressure (66 percent); headaches (53 percent); rhythmic ringing in ears (30 percent); dizziness (28 percent); a whooshing sound in the ear (24 percent); neck pain (22 percent), according to data released at the International Symposium on Endovascular Therapy

Per Dr. Jeffrey Olin's presentation at ISET, "there has been virtually no new information in the last 30 years" regarding FMD, as the result of "small case series, case reports (the majority of published papers are single case reports), nothing on pathogenesis, little on genetics, nothing on imaging, little on methods of angioplasty, no new classification since Mayo Clinic 40 years ago." In saying as much, Olin does a bit of a disservice to his own prior publications on FMD and publications by those doctors oft associated with FMD. However, the 2012 conclusions drawn from the registry were widely familiar—FMD is often found by accident after a stroke or transient ischemic attack; it should be looked for in young patients with high blood pressure or migraine-type headaches; it can be diagnosed with angiography, CTA, or MRA; angioplasty can be used to open up affected arteries if done early enough; lood thinners and antiplatelet drugs may be prescribed; FMD can lead to a tear in the artery or permanent kidney damage; it is unclear what causes FMD; FMD is an underdiagnosed disease.

For patients to enroll in the registry they must travel to one of a handful of participating centers. Of the 339 patients included in the ISET report 148 were enrolled at the Cleveland Clinic in Ohio; 68 at Mount Sinai in New York; 35 at the University of Michigan; 32 at Alliance Health in South Carolina; 20 at North Central Heart in South Dakota; 18 at Ochsner in Louisiana; 18 at the Mayo Clinic. Data indicates that 328 procedures were performed on 171 of the patients enrolled, with 54.3 percent receiving Percutaneous Transluminal Angioplasty; 21.3 percent receiving Percutaneous Transluminal Angioplasty and Stenting; 8.8 percent receiving a vascular bypass; 4.9 percent receiving endovascular repair of an aneurysm; 2.7 percent receiving open surgical aneurysm repair; and 7.9 percent in the "other" category for therapeutic procedures. Of these 171 patients, 73.2 percent's target vessel was the renal artery. 

Such findings are of clinical value for those unfamiliar with FMD, and the conclusion that FMD presents in the carotid and/or vertebral arteries as often as the renal is indeed intriguing and aligns with the conclusion that "the most common presenting symptom/sign was hypertension followed by headache, pulsatile tinnitus, and dizziness." Patients among the FMD Chat community are well-acquainted with these symptoms; however, there remains a significant gap between recognizing the prevalence of these symptoms and treating them. 

Hypertension in FMD is caused by renal artery stenosis, which causes the kidney to emit renin, a chemical that raises the blood pressure. This hypertension often is treated with anti-hypertensives widely used in the general population. The problem is that FMD related hypertension often is resistent, requiring multiple medications and high doses to manage. These drugs—as with all drugs—come with their own sets of complications, and to many patients fulfill the cliche "the cure is worse than the disease" in terms of physical effects, as patients typically do not feel hypertension, known as the silent killer, while anti-hypertensive side effects such as swelling, coughing, chest pain, irregular heart beat, fainting, nausea, and shortness of breath are much more noticeable. Headache related to FMD becomes complicated by the fact that patients generally are advised not to take NSAIDs, which can cause kidney and stomach damage. Those with migraines are further restricted if prior vascular events such as uncontrolled high blood pressure or stroke contraindicate vasoconstrictors such as the commonly prescribed Imitrex. The Federal Drug Administration has approved no drug to treat tinnitus, and, based on what patients have reported within the FMD Chat community, dizziness typically appears only intermittently, making it a somewhat vague symptom to treat in any manner other than a directive to "stand up slowly." 

Granted, only about 250 of the approximately 7,000 rare diseases in the world have FDA approved treatments; however, treating symptoms of a disease is a different exercise than treating the disease's underlying cause. The FMD community is in dire need of measures to improve patients' quality of life. Research into the disease's genetic factors, while needed, does nothing to help patients currently living with the disease. And so a year after first issuing my plea, I say once again, "More must be done across the related specialities to address the issues that many FMD patients struggle with on a day-to-day basis including crippling fatigue and pain, the inability to work and lost income, depression and anxiety, isolation and fear. These issues are imminent threats to patients' overall health, and without a concerted effort to holistically treat patients there may well be fewer patients willing and able to participate in research studies."

What has changed in this year's time is that FMD Chat, then a fledgling organization, has grown, and that I am making it a personal mission to improve current patients' quality of life. Part of this mission is selfish—I am an FMD patient, and I want better care for myself. However, I also want better care for the hundreds of FMD patients who have made FMD Chat part of their support network and for all the patients FMD Chat has yet to reach. This mission is about making a difference and caring tenaciously for a group of patients in need, a group of patients that I have come to consider my friends and family.

Dissing Ability

Whether in odds or evens, flights, or cases, stairs divide the cans from the can nots. When I was discharged from the hospital, misdiagn...