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Video has consumed my life lately.

What works? How do you tug at the hearts of viewers without overwhelming them? What are good ways to engage an audience? How do you interview subjects about sensitive topics? What are the best ways to avoid clichés?

I’m still improving my technical skills, but I’ve found it easier to envision the stories I want to tell and how I want to tell them. One video, “Penny’s Heart,” serves as an excellent example to draw from. I originally saw the video on NPR’s website last year and was deeply touched by it.

In a sense, the producers framed the story almost like a PSA. They drew attention to a serious issue, put a face to a statistic and led the viewer to action (organ donation).

Despite its literal call to action, there’s more to it.

Maybe it’s a call to live life more fully. Or a chance to view one person’s disaster as another’s miracle. Either way, it makes you think. It makes you feel.

Grab the tissues.

Penny’s Heart was produced by Lukas Korver.

This is the last in a series of posts on science news embargoes and the Ingelfinger rule. My first, second and third posts look at why the conventions fall short, and the post at hand details alternatives put forth by science communication experts.

Yes, there is light at the end of this embargo/Ingelfinger tunnel! Read two journalists’ opinions about ways to improve science news production below. Photo by JarkkoS/Flickr.com

In today’s media landscape, with information and breaking news a click away, the embargo system and the Ingelfinger rule hinder journalists from sharing scientific and medical information with the public in real time.

By emphasizing the novelty of research rather than its merit, the embargo system leaves little room to investigate the institutions and decisions behind the production of science. Kiernan argues (1997) that embargoes “undermine” the depth and breadth of science coverage and leave investigative journalism on the sidelines. Fishing for controversy should never be journalists’ only focus, but there needs to be professional space between writers and the people and institutions they focus on, especially in light of reporters’ strong working relationships with the scientific community for access and story “scoops.”

But one can argue that using embargoes seems rational in today’s media climate. One report examining news-gathering at a major science conference suggests that a journalist’s number of deadlines is positively associated with his reliance on press releases for ideas (Dunwoody, 1979). It’s likely this trend holds true in modern newsrooms as well. In addition, promoting an increase in investigative coverage of science can be difficult, as time and financial resources are increasingly stretched. Finding ways to inspire journalists to investigate areas in which they lack expertise” can pose challenges, too.

Don’t despair, though: there are alternatives. For one, scrapping the Ingelfinger rule would allow larger discussions about the quality of peer-reviewed work before and after a given study is published (Altman 1996). Even more, institutions such as the National Institutes of Health could include provisions in grant awards that protect scientists’ rights to discuss their research, regardless if it’s being reviewed by a journal. Such a framework can undermine the Ingelfinger rule altogether.

More realistically, however, it’s journalists who will need to push for change. Some science journalists have given this considerable thought and advocate for leaving both Ingelfinger and embargoes behind. Reuters Health executive editor, Ivan Oransky, leads efforts to change science journalists’ dependence on the institutions they cover. His popular blog, Embargo Watch, tracks issues and inconsistencies of the embargo system, and his work has led to changes in journals’ policies. As evident from Oransky’s success, science journalists possess considerable power in altering journals’ rules.

Here’s a presentation Oransky gave at UW-Madison last year. I wasn’t able to go, but appreciated the slides being posted online.

Former Scientific American editor in chief John Rennie (check out his blog here) also believes journalists can drive the move away from embargoes and Ingelfinger. But as long as journalists are complacent with relying on embargoes, not much will change, he adds. This point is important, especially because journalists work close to deadlines and often depend on embargoed information to plan their weekly coverage (Kiernan, 2006). In a sense, altering behavior can even be viewed as more work for reporters. Rennie says the role of journalists is to serve the public. To achieve this, writers should toughen up and work around relying on the “crutch” of the embargo system.

Yet both Oransky and Rennie point out that even if journalists dissolve embargoes, the Ingelfinger still places a substantial constraint on the flow of scientific information. In the past 5 years, science journalists have used social media and blogging platforms to directly share scientific findings from conferences with the general public. Yet journalists still struggle to gather the details sometimes needed to produce high quality science news because of the Ingelfinger rule. For example, scientists presenting preliminary results at a conference may refuse to answer journalists’ questions about their research out of fear of not being published. Interestingly, this has been the case even when the event is sponsored by the journal in question.

“Journals vary in how strictly they apply the rule, but it’s become clear to me that Ingelfinger, much more than embargoes themselves, is what gives journals the stranglehold they have over scientific information,” Oransky says. Instead, he describes embargoes as “symptoms” of the Ingelfinger rule, even though the geneses of the two conventions vary greatly.

To help move journalists beyond the embargo system, Rennie proposes an experiment, where science journalists are challenged to avoid writing about a study until six months have passed from it being published in a journal. The concept builds upon the idea that embargoed news does not highlight the most newsworthy research people ought to know about, but rather studies resembling “infotainment” and hype that temporarily draw in Internet traffic. “Maybe the right way to write about research is not to race to it, but to take the time to let the rest of scientific community respond,” Rennie says. This way, only the research that withstands post-publication scrutiny will receive attention. Plus, this would encourage journalists to seek more interactions with scientists and cover research as a process rather than as unrelated fragments.

If journalists change, embargo services and journals will likely follow suit. In efforts to maintain profits and control, press offices will alter their approaches, packaging studies and research in a broader context to meet the needs and preferences of science journalists, Rennie says. Even though he says he’s not in favor of placing time premiums on information, Rennie suggests that journalists can slowly change the kind of news press officers choose to embargo or even faze embargoes out entirely. One roadblock, however, is budget issues, and until editors and news organizations make efforts to invest in high quality coverage of science and medicine, they will be limited in their success. As institutions and universities continue to develop larger public relation offices, they also gain highly skilled science writers that can produce copy that’s just as good as that of journalists. Because of this, it’s important for independent writers to provide context and seek sources outside of press releases for their blogs and articles.

In sum, embargoes on scientific and medical information and the use of the Ingelfinger rule benefit journals and journalists, not the entity both institutions claim to serve: the public. By assessing arguments in favor of each convention, it has become clear that the costs of maintaining such rules are too high to justify their existence. Looking forward, scientists, journal editors, press officers, and science journalists should work together to serve the well-being and interests of the public. Until all parties work together, journalists can begin exploring more investigative and creative methods of covering science and medicine.

Thanks for reading.

For perspective (and fun), here’s a humorous cartoon account of how some press officers may view embargoes.

Works Cited

Altman, L. (1996). The Ingelfinger rule, embargoes and journal peer review — part 2. The Lancet, 347, 1459-1463. doi: 10.1016/S0140-6736(96)91689-

Dunwoody, S. (1979). News-gathering behaviors of specialty reporters: a two-level comparison of mass media decision-making. Newspaper Research Journal, 1, 29-41.

Kiernan, V. (1997). Ingelfinger, embargoes, and other controls on the dissemination of science news. Science Communication, 18(4), 297-319. doi: 10.1177/1075547097018004002

Kiernan, V. (2006). Embargoed Science. Urbana: University of Illinois Press.

Oransky, Ivan. Personal communication. April 2011.

Rennie, John. Personal communication. April 2011.

This is a second post in a series on the role of embargoes and the Ingelfinger rule in the production of science news. Click here for the first post.

Photo by sAeroZar/Flickr.com

Although proponents of embargoes argue the convention increases the quality and accuracy of science news, there is sparse evidence to support this conclusion. In fact, opponents to both embargoes and the Ingelfinger rule argue they actually degrade the quality of science news. Some even question the quality and reliability of peer-reviewed research, too (Freedman, 2010).

It’s troublesome to assume that embargoes equate to increased quality. As Fred Molitor notes in his 1993 review of media coverage of a study featured in The New England Journal of Medicine, most of the caveats of a given experiment were excluded from newspaper articles despite journalists having extra time for reporting. In the study, researchers found that a group of male physicians who took aspirin had nearly half the number of heart attacks when compared to a control group. Science journalists covering the study, however, neglected to report that men receiving the treatment also experienced strokes, which is arguably an undesirable — even deadly — side effect. Even with extra time to write about the findings under an embargo, journalists did not include the caveats in their coverage, which may have misled readers into thinking the treatment was “risk-free.”

Press releases can degrade the quality of science news as well. Steven Woloshin and Lisa Schwartz (2002) note that press releases generally fail to address studies’ limitations and rarely disclose industry funding. At a more basic level, the authors argue press officers make decisions based on their own sense of “perceived newsworthiness.” Essentially, press officers do not always choose to write releases based on the quality of the research, but rather by the qualities they believe will appeal to journalists and their editors. Schuchman and Wilkes (1997) also point out the fact that embargoes “increase the perceived ‘newsworthiness’ of a journal article, thereby encouraging an over reliance on journals as a source of scientific news.”

Former Scientific American editor in chief and journalism instructor John Rennie says it’s not difficult to tell which stories are embargoed because they seem “interchangeable.” Although the public might not initially see a problem with this type of pack reporting, he believes regular consumers of science news and people who think more critically about the information presented to them notice the lack of diversity. Along these lines, Rennie says the public should want more diversity and creativity in coverage from journalists. Otherwise, he adds, readers could gain their science news from reading press releases alone rather than from independent outlets.

Also called “churnalism,” lifting significant amounts of information from press releases is already receiving attention in Great Britain, where a website now compares press releases with news stories and calculates the percentage of content copied (and even plagiarized!). Embargoes also affect the intensity of competition among journalists. Experienced writers argue embargoes place them on equal grounds with novices, when their expertise naturally allows them to report with a faster turnaround (Kiernan, 2006).

Screenshot comparing a news story with a press release from the website Churnalism.com

Losing the “newness” of an embargo also influences journalists’ behavior. In one instance, an ABC News reporter broke an embargo out of fear that he would be “scooped” by other organizations (Kassirer & Angell 1994). Overall, embargoes limit competition before publication and intensify it after their passing.

As emphasized by Miriam Schuchman and Michael Wilkes (1997), access to scientists also affects the quality of science news. In efforts to reduce reporting science and health findings out of context, the authors suggest that “researchers who present papers at meetings or publish them in journals should be available to the press to clarify and explain their findings” and that “closed discussion of research may provoke sensationalism that open discussion could prevent.” Clearly, scientists submitting manuscripts to journals that follow the Ingelfinger rule violate Schuchman and Wilkes’ recommendation altogether.

Using the same argument, Rennie says the Ingelfinger rule is not only a means of competition among journals, it is a mechanism of power. “Frankly, a lot of journals that enforce the rule do so in ways that seem capricious at times.” he says. “…People [scientists] err on the side of caution and do not talk to reporters.”

Critics of embargoes and the Ingelfinger rule argue that the peer review process does not necessarily ensure the information published is always correct or reliable. Lawrence Altman (1996) writes that the process should be viewed as a form of “editing” or even a “tool of editing” rather than a final, irrefutable result. Along these lines, the suggestion favors a view of science as a process that often suffers from the same controversies and errors as other institutions. Although peer review provides the best analysis of scientific research at this time, some scientists estimate — controversially — that the majority medical findings are wrong (Freedman, 2010).

Ivan Oransky, executive editor at Reuters Health, says this view of the peer review process is increasingly common. Even more, embargo providers routinely channel “questionable science” that has not undergone the peer review process or misleads journalists through poorly designed methodology, he says. The lack of quality control on certain embargo websites as well as their tendency to allow institutions to embargo material that has already entered the public domain ultimately degrade the quality and credibility of science news.

In the next post, we’ll look at how embargoes can delay readers and viewers from receiving important health information.

Works Cited

Altman, L. (1996). The Ingelfinger rule, embargoes and journal peer review — part 2. The Lancet, 347, 1459-1463. doi: 10.1016/S0140-6736(96)91689-

Freedman, D. (November 2010). Lies, Damned Lies, and Medical Science. The Atlantic, 306(4), 76-84

Kassirer, J., & Angell, M. (1994). Violations of the embargo and a new policy on early publicity. The New England Journal of Medicine, 330(22), 1608-1609. doi:
10.1056/NEJM199406023302211

Kiernan, V. (2006). Embargoed Science. Urbana: University of Illinois Press

Molitor, Fred. (1993). Accuracy in science news reporting by newspapers: the case of aspirin for the prevention of heart attacks. Health Communication, 5(3), 209-224. doi:10.1207/s15327027hc0503_

Oransky, Ivan. Personal communication. April 2011.

Rennie, John. Personal communication. April 2011.

Schuchman, M., & Wilkes, M. (1997). Medical scientists and health news reporting: a case of miscommunication. Annals of Internal Medicine, 126, 976-982.

Woloshin, S., & Schwartz, L. (2002). Press releases: translating research into news. Journal of the American Medical Association, 287(21), 2856-2858. doi: 10.1001/jama.287.21.285

Before blogging about other things (UGA’s Oil Spill Symposium and Seth Mnookin at UW, for starters), I want to step back and talk more about Age-related Macular Degeneration (see my first post on the topic). Let’s just say the BIMR conference in Irvine gave new meaning to the term “interdisciplinary” — to me, at least.

Simply put, the task group discussions played out as beefed up lab meetings, where scientists chatted about developments in the field. Covering these highly specialized researchers seemed daunting at first, especially since they knew one another and referenced research and studies unfamiliar to me. Though this made it hard for me to know what was going on at times (sadly, I don’t know many AMD researchers by first name), I think it was necessary nonetheless.  To move forward with the limited time the group was given, people had to be straight to the point.

In mixed meetings, experts from my group sat in on other group sessions and provided input. In my opinion, the mixed sessions made the conference a large success. My group consisted of imaging experts — researchers studying ways to detect signs of AMD with tomography techniques and other scanning methods (e.g., MRI). I found the discussions particularly interesting because I was uneducated about the importance of imaging to stage and monitor the progress of AMD, or any other eye disease for that matter. In addition to covering the imaging task group, I covered two other sessions: one on stem cell research and another on cell death.

Though I can’t comment too much on the specifics — since my report is currently embargoed for a later date, I can discuss common knowledge issues that stand in the way of studying and developing therapies for AMD.

For those of you with little knowledge of eye anatomy (i.e., me before the conference), it’s important to understand that AMD affects the portion of the retina called the macula. The lens of the eye projects light to the retinal surface toward the back of the eye, where photoreceptor cells convert that light into electrical signals to be interpreted by the brain (via the optic nerve). Light must pass through the macula to reach the optic nerve (and thus, the brain). Specifically, the macula allows you to focus on the contents of this post with your central vision.

Kudos to the macula, right?!

Here’s a nice illustration of the eye that shows some of this anatomy (from John Moran Eye Center, University of Utah).

For comparison, below are images of eyes diseased with AMD (from Eye; Sato et al.). Note the darker areas and spots in the middle of the eye. Read on for an explanation.

For patients living with AMD, quite a few things go wrong in the macula. In some patients, these yellowish deposits called drusen accumulate at a pigmented portion of the retina (more specifically, at a spot called the “retinal pigment epithelium,” or RPE). These deposits overtake the macula and can limit the amount of light reaching the back of the eye, causing central vision loss. Multiple researchers reiterated the point that not all drusen are the same. In fact, it was suggested a few times in public presentations that different drusen may be the manifestations of different diseases. Some even speculated that AMD comprises several unique diseases altogether.

That said, attendees still focused on the types of disease thoroughly studied. AMD generally comes in two forms: “wet” and “dry.” Drusen and geographic atrophy — the breakdown of photoreceptor cells — are associated with “dry” AMD. Other patients may be diagnosed with “wet” AMD (or neovascular AMD), where the blood vessels on the outer portion of the retina invade the macula and leak. The latter is less common than the former, which is why the conference focused on the dry form.

Geographic atrophy received much attention at the conference. Scientists know that AMD causes photoreceptor cells — rods and cones — to die, but they don’t completely understand why. This is where cell death experts and neuroprotection researchers chime in. Researchers and clinicians expressed interest in a more preventative approach that would make intervention possible before these cells die. Imaging the eye is particularly useful in developing an approach to geographic atrophy as well. In order to stage the disease in the long-term, researchers need to pinpoint specific biomarkers or signals that indicate cell stress before AMD actually takes hold. I thought this session was particularly interesting because it seems as if doctors are open to screening people who have a family history of AMD before they show signs of the disease.

Another idea that was particularly intriguing was using stem cell transplants to treat patients with AMD. In a general sense, transplanted stem cells can be programmed to emit signals to indicate cell health. Since the body may reject the transplant, monitoring cells with imaging techniques would help identify whether the transplant was successful at the cellular level. This may be years in the future, I don’t know…

These are just a few highlights from a science writer’s perspective — I plan to link to my report when it’s published later this spring. I will be able to comment more once the reports are public.

Overall, I had a blast at this conference. I met some really great scientists who believe in the power of science communication (music to my ears!). I also had the unique opportunity to work with science writing guru Barbara Culliton and several talented science journalism grad students I hope to stay in touch with in the future. My only complaint would be not dipping my feet into the Pacific — I’ll have to make another trip to California for that one.

When it comes to losing one’s senses, I think about Cat Stevens’ poetic melancholy in his hit “Moonshadow.” Losing your vision isn’t that bad if you “won’t have to cry no more,” he sings.

It’s a great song, but I like my senses very much. And so does everyone else, I think.

In fact, losing sensory perception can be a terrifying thought, especially if one’s vision is at stake.

I remind myself of such things as I gear up to attend a conference on Age-related Macular Degeneration (AMD) sponsored by the Beckman Initiative for Macular Research this week in Irvine, Calif.

AMD is a leading cause of central vision loss and blindness in adults 60 years and older. Researchers have yet to figure out what causes the disease or how to stop it. The disease affects the macula portion of the retina; the retina is a light-sensitive lining near the back of the eye. Without the retina and a healthy macula, it would be difficult for the eye to turn light into electrical signals for the brain, resulting in gaps in vision seen below.

These photos contrast a healthy macula with one with AMD [photos: National Eye Institute]:


 

AMD is likely to become a larger issue over time, considering its prevalence among people over the age of 60 and America’s aging Baby Boomer population. That said, I read about a recent study (from UW) that states that rates of AMD have actually decreased in recent years. While this is good news, I’m interested to hear what other researchers think about it.

As a science writer attendee (along with other fellow graduate science writers), I’ll cover the work of leading researchers looking to develop better diagnostic tools and treatment for patients living with AMD. My task group will tackle pairing imaging modalities and potential biomarker candidates for AMD. Essentially, scientists in my group will discuss what types of structural and/or metabolic changes researchers should monitor as the disease progresses. They’ll also look at current imaging technology and brainstorm which types will yield the most clinically translatable results.

There’s so much to learn about this topic, and I feel I’ve only begun to skim the surface. With that in mind, I’m going to use my blog to post things I’ve learned from the conference.

Go check out AMD yourself — the BIMR’s tutorials are very helpful…

More to come soon!

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About Me

Marianne is a science communicator working in Madison, Wis.

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