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Experts: Restrictive Sharing Policies Have No Place at Medical Meetings

— Most societies now expect that information will be shared widely

Last Updated June 15, 2017
Ƶ MedicalToday

This article is a collaboration between Ƶ and:

Scientific meetings exist to openly share new information, which is why the majority of experts contacted by Ƶ offered only criticism of the American Diabetes Association's strict enforcement of a no-sharing policy at its annual meeting last weekend.

In an age of social media and easy connection with researchers around the world, information should flow freely so that science can progress, senior academic researchers told Ƶ. That's something that most medical conferences have embraced; even those with restrictive written policies rarely crack down on the frequent flouting of the rules.

"Dissemination of knowledge is the principal reason for holding scientific meetings," Steve Nissen, MD, of the Cleveland Clinic, told Ƶ. "In my view, we should do everything possible to ensure the free exchange of scientific ideas, including sharing of slides and presentations. Such openness and transparency promotes medical progress. Secrecy impedes medical progress. The ADA should reconsider its policy."

Fred Masoudi, MD, of the University of Colorado Denver, said he imagines that "if they aren't already, ADA will regret having attempted to enforce this policy. In my opinion it was ill advised, first because it stifles the free exchange of scientific information, and secondarily because it is impossible to enforce and presumably alienated many attendees (as well as those hoping to learn about the conference through social media)."

"We are in an era where more than ever data want to be free," said James Januzzi, MD, of Massachusetts General Hospital in Boston. "This includes rapid sharing of information to the public about important scientific advances. Social media has become such a method by which rapid dissemination of important scientific results -- without filter -- may occur. By restricting free speech in the form of Twitter and other social media platforms, the ADA is achieving little more than causing negative press. Other national and international meetings not only allow social media sharing, they promote it."

The ADA said it enforced the rule to protect authors' intellectual property, and prevent potential embargo violations. But Januzzi said those aren't valid reasons, given that presenting data at a meeting doesn't usually preclude it from publication in a journal these days.

And "if intellectual property is so important to the individual investigator, then they should not waste time presenting at a meeting and should simply publish the data quickly in a peer-reviewed journal," said Edward Kim, MD, of Carolinas HealthCare System in Charlotte, N.C.

Ingelfinger is Dead

Although the "Ingelfinger Rule" once scared researchers away from revealing their data too early lest it not be accepted for publication in a medical journal, most journals have long retreated from the rule, according to Robert Schooley, MD, of the University of California San Diego, who said the AIDS epidemic and the need for rapid dissemination of information helped to start to smother Ingelfinger.

Richard Horton, MD, editor-in-chief of The Lancet, told Ƶ that slides shared widely on social media wouldn't prevent publication in his journal.

"We believe that scientific conferences are an important venue to share preliminary or new findings for debate and discussion with colleagues," Horton said. "We are fully happy with authors disclosing results at scientific meetings, and we welcome dissemination of those results through the press and social media."

Jennifer Zeis, media relations manager at the New England Journal of Medicine -- where the Ingelfinger Rule was birthed in 1969 by legendary editor Franz Ingelfinger -- told Ƶ that "tweets from a meeting presentation would not jeopardize an author's chances at publication, and this includes tweets that include photos of slides. We do not want to obstruct the discussion of research at scientific meetings."

A spokesperson for the American Heart Association said social media content from a meeting doesn't compromise consideration for publication in one of its journals.

Indeed, some researchers are even championing pre-publication peer review in , Schooley said. A similar repository called is has been frequently used by other scientific disciplines for years now to post manuscripts for comments "during or before peer review in 'real' journals."

'Intellectual Piracy'

In its written policy, ADA says that taking pictures of the slides or recording audio during sessions is "considered intellectual piracy, and [is] unethical" -- in a tone resonant with NEJM editor Jeffrey Drazen's comments about "."

But as Drazen explained that he was only pointing the finger at those who merely copy the work of others, experts did see a real need for giving credit where it is due.

"I think restrictions on re-use make sense," David Katz, MD, of Griffin Hospital in Derby, Conn., said. "I routinely share my slide decks, but I ask that if anyone else uses my slides, they attribute them to me. I think there is a reasonable balance to strike between respect for 'ownership' and respect for the timely dissemination of information."

Darrel Rigel, MD, of NYU Medical Center, said it's "very distracting as a speaker when you see people in the audience shooting photos with their iPads or phones ... and then disappointing when you later are in other lectures and see your slides used by them without citing the source."

But leaning on the excuse of protecting authors from intellectual piracy becomes disingenuous when the society stands to gain financially from being the sole source of dissemination of the information, Schooley said.

"Some meetings use restricted access to try to force enrollment and participation to increase revenue," Schooley told Ƶ. "In my view, this should not be something scientific organizations should support or accept."

It's also been argued that the ADA is hypocritical: as a condition of attending the group's meeting, individuals must agree to allow themselves be photographed and to grant the ADA the right to use their names and likenesses in perpetuity "for any and all of ADA's lawful purposes."

Revisiting Organizational Policies?

Most of the large-scale medical organizations contacted by Ƶ said they have no restrictions on the widespread sharing of information presented at their meetings, including the American Heart Association, the American College of Cardiology, the American Society of Clinical Oncology, the American College of Physicians, the American Association of Clinical Endocrinologists, and the American College of Lifestyle Medicine.

The majority were quick to distance themselves from the ADA's decision.

In a statement, the AHA said that its "strategies for supporting and promoting cardiovascular and stroke research have evolved to keep pace with today's revolution in how scientists seek groundbreaking discoveries. We do not prohibit attendees or accredited members of the media covering our scientific meetings from sharing information on social media – after the embargoes lift."

The ACC said it allows pictures of slides for personal non-commercial use and considers social media to fall within that category, while ASCO said that non-flash photography and audio or video recording is permitted if it's not disruptive -- though it does include the caveat, "as determined by ASCO."

The American College of Chest Physicians said during its annual CHEST meeting that it "encourages and enthusiastically participates in social media, and welcomes social activity at our meetings and events," according to communications director Kristi Bruno. Five years ago, the society actually appointed two physician social media advisors to encourage widespread digital sharing of the group's content.

But there are some groups that restrict photography at their annual meeting per a written policy on their website. These include the Pediatric Academic Societies (PAS) and the Transcatheter Cardiovascular Therapeutics (TCT) meetings.

Yet these rules are rarely enforced: "I can assure you that this policy was not enforced at the 2017 [PAS] meeting or at previous meetings," F. Sessions Cole, MD, of St. Louis Children's Hospital in Missouri, told Ƶ.

The written policies even seemed surprising to leadership at some of these organizations.

"CRF/TCT hasn't used this policy for 20 years," Gregg Stone, MD, director of TCT, said on Twitter. "In fact, we post every presentation immediately! We stream LBTs. Everything should be shared."

Stone added that "if it is still on the books we will formally remove it."

Whether the ADA will revisit its policy remains to be seen -- although it did note in a statement that after this year's controversy it plans to "re-evaluate the policy and our legal obligations to the researchers who present at Scientific Sessions."