Debate: Benefits, harms of social media sharing from medical conferences

The number of tweets that came out of the American Society of Breast Surgeons Annual Meeting between 2013 and 2016 increased by 600%, according to results published in the Annals of Surgical Oncology.

The results also indicated that the number of impressions increased from more than 3.5 million to approximately 20.5 million – a 469% increase.

Additionally, the number of unique medical conference hashtags created for use on Twitter significantly increased from 1,428 in 2014 to 2,282 in 2016, according to data from Symplur Signals database.

These data indicate more medical professionals and medical associations are using social media at medical conferences, according to the report.

However, as more associations adopt social media at medical conferences, some associations have prohibited attendees from taking photos at sessions and sharing them on social media.

The Association for Research in Vision and Ophthalmology has a policy that states “recording by any means – [including photography] – of any presentations or sessions at any ARVO Meeting is prohibited, except by an ARVO-authorized agent for official purposes or by first authors who wish to photograph their own poster presentations.” In addition, the American Diabetes Association has a policy that “prohibits photography in session rooms and [the organization] will try to prevent it” during its annual meeting.

ARVO and the ADA did not return a request for comment for the story.

However, the American Society of Clinical Oncology issued a statement to Healio.com that states, “While we are unable to comment on the policies of other organizations, our policy for our annual meeting and thematic meetings is to allow non-flash photography and audio or video recording using hand-held equipment for strictly personal, social, or noncommercial use, as long as it is not disruptive. Additionally, we believe social media is a helpful tool to share educational information, and as an educational organization we felt that embracing it and allowing the content from the meetings to be seen by others was positive.”

Healio.com spoke with clinicians from leading institutions about the possible implications, drawbacks and benefits of organizations prohibiting medical conference attendees from taking photos of oral abstract and poster sessions and sharing those images on social media sites.

The clinicians Healio.com spoke with offered a variety of opinions on the practice of prohibiting the sharing of data on social media live at medical conferences.

One clinician mentioned the practice seemed Orwellian, while another highlighted that it is a philosophical issue and individual honor codes should prevent people from taking photos of research.

Read perspective from Deanna Attai, MD, an assistant clinical professor of surgery at the David Geffen School of Medicine at University of California, Los Angeles, here.

Read perspective from Brennan M. Spiegel, MD, MSHS, AGAF, FACG, director of health services research in academic affairs and clinical transformation at Cedars-Sinai Health System, here.

Read perspective from Peter Chin-Hong, MD, professor of medicine at the University of California, San Francisco School of Medicine, here.

Read perspective from James R. Goldenring, MD, PhD, vice chairman for research at Vanderbilt University School of Medicine, here.

Read perspective from Michael A. Thompson, MD, PhD, medical director of the early phase cancer research program at Aurora Cancer Care, here.

Online conversations will happen, regardless of an organization’s ‘blessing’

For the physician attending the conference, the use of Twitter by attendees allows for discussion in real time about the podium topic. Rather than a one-way lecture – because many conferences only allow a small amount of time for questions and answers – Twitter changes the conference experience to a more dynamic real-time discussion. The discussion is often enriched by multiple points of view.

Physicians not attending the conference may participate in the dialogue. They may or may not be members of the organization that is hosting the conference and there are various reasons why one might not be able to attend a meeting. Twitter allows at least some of the educational content to be shared with those not physically present. A physician also has the opportunity to ‘lurk’ or virtually attend conferences that are not in their specific specialty, but find the material personally interesting or relevant. There is a limit to how many conferences one can attend.

Additionally, patients have the opportunity to learn. While a growing number of medical organizations have patient member categories, most patients do not attend medical meetings. For those who are interested, following a relevant conference on Twitter and interacting with conference attendees can be very educational.

I’ve never been to a meeting where this has happened, or where a speaker has requested that information not be shared. Conference abstracts and posters are usually published in meeting proceedings, which often are searchable online [in advance of the meeting]. Many comments expressed online during the annual American Diabetes Association Scientific Sessions were in support of open sharing of information that was presented, and I share that opinion. In this era of nearly ubiquitous, instantaneous sharing of online information, it is probably not realistic to expect that physicians attending a large conference keep information confidential. There may be situations such as an organization strategic planning meeting or industry-sponsored think-tank where the information discussed is sensitive and confidential, but this should be clearly stated to attendees ahead of time and during the meetings. However, this is different than the situation of a national meeting, where many presenting their research, I would assume, eventually hope to have their material published and widely disseminated.

Conference organizers should welcome the free publicity that a Twitter presence brings. A robust discussion can create positive buzz for the sponsoring organization. This can help elevate the awareness of the organization among current and prospective members, the media and the public.

There are many different options to help conference attendees learn how to use Twitter. ‘How to’ sessions by experienced users can help the novice become more comfortable with the use of Twitter in a professional setting. Identifying a team of ‘super users’ ensures that there are role models for those new to the online platform. Advertising the conference hashtag well in advance to meeting attendees as well as during the conference can ensure that the discussions all occur on the same channel using that hashtag. Many conferences will post a video monitor with selected tweets, so that attendees can see the online discussion, even if they are not Twitter users.

Conference organizers need to understand that the online conversations are going to happen with or without their ‘blessing.’ They should take advantage of this by educating their members and conference attendees.

Deanna J. Attai, MD,

Assistant Clinical Professor of Surgery

David Geffen School of Medicine at University of California, Los Angeles

Disclosures: Attai reports no relevant financial disclosures.

‘Scientific meetings are not secret society events’

I view scientific meetings as public-facing events where key stakeholders can exchange notes and thoughts that advance science. This is exactly the time to make data transparent and available. For anyone concerned that their data will somehow be ‘scooped’ or reproduced maliciously, I suggest they only share what they want to share. It’s up to each presenter to decide whether, and, how much to share. But, once results are shared, then they’re out there. For those worried about an intellectual property infringement, there are existing mechanisms to protect against that in the form of invention reports and patents. Disallowing photographs or recordings at a scientific meeting will do little, in my opinion, to stem illegal behavior. There are existing legal mechanisms to address those valid concerns that are wholly independent from taking people’s cameras away at scientific symposium’s. One has little to do with the other.

For researchers worried their data will be stolen, they should not present their data. That seems simple to me. Just keep it under wraps until the time is right, and don’t present secret data at a public forum. I am personally only going to present data that I am ready to share. Anything not ready to share is, well, not ready to share.

We live in a very open society where data are shared fluidly through multiple channels. Once data are out, they’re out. Researchers should simply be careful about whether and when to release data. If you’re worried someone will steal data or crib your results, then take the necessary steps in advance to protect your data through existing legal mechanisms, like through University invention reports or provisional patents. Banning photos at a meeting will do very little, if anything, to stop malicious behavior. People taking photos to steal your stuff are probably going to take photos either way. Most people taking photos are trying to share the data, catalyze the transmission of information and advance the field in a way that allows all stakeholders to benefit. It’s cynical to think most people taking pictures are trying to steal your stuff. If you’re that paranoid, then just don’t present your stuff. Or, just present the data you are prepared to share with the world. Scientific meetings are not secret society events that mandate a special handshake to get in the door. They are for anyone who wants to attend, learn and share.

Brennan M. Spiegel, MD, MSHS, AGAF, FACG,

Director, Health Services Research in Academic Affairs and Clinical Transformation

Cedars-Sinai Health System

Disclosures: Spiegel reports no relevant financial disclosures.

Promoting ‘#freethetweet’

A blanket ban on taking pictures of sessions and posters at scientific meetings jarringly runs counter to the culture of openness and discourse in science. And to have a conference sponsor publicly scold attendees by responding to individual tweets of conference pictures – for example a talk title slide – seems incredibly Orwellian. That is why people – including myself – have such a strong and negative first reaction and promote #freethetweet and #freedomoftweech. Fortunately, I have never attended a meeting where this has been enforced. The meeting is essentially a town hall for people to react to and engage with science that is presented. It is a chance for people to learn collaboratively and debate new information presented. Twitter merely amplifies this, opening the findings of meetings to professionals in the field who couldn’t make the meeting – or pay the hefty admission price tag – as well as to a wider audience of the interested public, including patients.

Critics have mentioned several concerns. First, that information is protected. But, much of this information is already available on abstracts that are usually publicly available before the meeting and on the website. In addition, others voice concern that the public ‘twitterverse’ will not be able to rationally contextualize raw and preliminary data that have not been subject to rigorous peer review. But paternalism misses the point of social media – which is to begin or continue a conversation. No tweet is the final say. It sparks the dialogue. Isn’t that the whole point of science?

Rather than have a faceoff so that the controversy itself eclipses the science, setting up clearer guidelines and a shared understanding is the better way forward. Conference organizers should meet with stakeholders and develop a comprehensive social media policy regarding both presenters and attendees. Presenters are also permitted to say at the beginning of the session whether they would prefer that no photography or images be distributed on social media or elsewhere. Finally, we all need to learn and refine best practices in content creation. As conferences have historically permitted – in fact, encouraged – attendees to use social media, we have to use this power responsibly. This includes striving for accuracy, asking permission if in doubt before tweeting, not using patient identifiers, being respectful of others and differentiating personal opinions from that of the presenter if reporting on a particular paper or session.

The idea that tweeting – or sharing on other social media sites – would restrict the preliminary research from being published in the future is a valid concern. The New England Journal of Medicine has at least addressed this, with the Ingelfinger rule, by stating that “all published abstracts, as well as any media coverage based on them,” would not exclude the possibility of future publication. I would be surprised if any journal denied publication based on prior social media reporting, and am not personally aware of any case where this has happened.

There is nothing magical about social media that makes it easier to appropriate ideas from others. Stepping back, one should probably ask: whose data are they really? In an era of data sharing, it is the investigator’s or the journal’s? Is it the taxpayers? Or the universities whose infrastructure supported the science and the investigators? Information access and dissemination is rapidly changing. The relationship between the data creators, the communicators and the consumers is evolving. And rather than react impulsively, meetings and journals should be proactive about setting clear guidelines and expectations up front. This will lead to much less confusion on the part of everyone and put science where it belongs – at center stage.

One other powerful potential motivator to being more restrictive with communication is financial. Meeting organizers and journals that charge for attendance or information in general clearly have an interest in keeping a tight lid on study findings – think a trailer for the movie, but not the movie itself. And to stay financially viable, this is understandable. Companies that share preliminary study findings are also very conscious about impact on stock prices if spurious interpretations or speculations are widely disseminated, particularly by social media influencers. These forces are at play whether they are acknowledged openly or not.

Peter Chin-Hong, MD,

Professor of Medicine

University of California, San Francisco School of Medicine

Infectious Disease News Editorial Board member

Disclosure: Chin-Hong reports no relevant financial disclosures.

Researchers might stop presenting their data

I consider this a philosophical issue more than anything else. It’s how we perceive presentation of data at a national meeting or an international meeting and that is what we want our meetings to be, an open forum for presentation of data that’s new and not published so that there’s open discussion and early discussion of new concepts and new data. To make that happen, traditionally, and I think it is a correct thing [to do] in basic science, which is different from clinical science, there’s been a code of conduct that data will not be photographed for dissemination, or photographed even for replication. That protects that individual from having data either taken away and used without permission or taken away and copied. This is sort of a code of conduct in basic research. Other researcher’s points-of-view come at it from a clinical research perspective, which is much different – it’s the view that people want to sell their idea or disseminate their idea, and I’m OK with that. They can get away with that much more perhaps, because to do a clinical research study is a lot easier than doing a basic research study. I personally, during my scientific career, had a poster photographed and published in its entirety. I have had someone photograph data off my poster and then included in their publication. This happens, but we shouldn’t condone it.

There’s an honor code here. Having said that, often now in publications, because there’s a need for evidence of replication, journals will ask to see original data. Which a researcher must be able to produce, and if they can’t, they’re in trouble. That’s the sort of inherent and underlying threat. I wouldn’t want to see it institutionalized – although some journals are going to this where all the data that led to a figure must be put into an appendix. This is a little bit of overkill but, there are a lot of journals doing this. I just think this creates a large amount of junk.

Additionally, there are posting sites and in particular, in bioinformatics research. What you can do with these posting sites is, if a researcher has a paper that they’re writing, they can post it online for discussion. The way that most of the better posting sites work is that if the paper is eventually submitted and then accepted for publication, it is pulled off the posting site or it’s replaced with - “if you really want to see this, go to the journal.” Now, that’s clearly a scenario where they’re posting it with the idea that they’re taking the risk. That’s not quite the same as someone photographing a researcher’s work at a meeting because then that researcher doesn’t really know if someone is [trying to take that data]. If we get to a scenario where it’s open photography then we’re going to see a lot of people not show up to present their work, if they think it might get stolen. I walked around the AACR meeting this year, and saw a huge number of posters that were not posted. Others had these big signs that said, ‘do not photograph’, which is sort of like asking for someone to stop pushing the red button.

That it will turn meetings into a very dull scenario because new research will not be published.

Certain meeting organizers can make a choice that some clinical sessions will allow photography, and that’s fine.

Based on our lives these days, I don’t think that this desire to have open access should override a general ethic of behavior and that should try to maintain, at least in basic science, a sanctity of findings and ideas that don’t belong to everyone without permission.

James R. Goldenring, MD, PhD,

Vice Chairman for Research

Paul W. Sanger Chair in Experimental Surgery

Vanderbilt University School of Medicine

Disclosure: Goldenring reports serving as an associate editor of Cellular and Molecular Gastroenterology and Hepatology.

Effort to bring timeliness together

First, rules like this are unenforceable and therefore not pragmatic. Dictators with control of the military and the media can’t control it – for instance, Twitter, Facebook and YouTube’s role in the Arab Spring.

While I am usually a rule respecting conference attendee, I did repeatedly violate a policy at a conference and at that time I tweeted something and I wasn’t thrown out.

@isth This anti-photo policy is antiquated and doesn't appear used even in the #ssc2014 app pic.twitter.com/TjGRI4cukK

— Mike Thompson, MDPhD (@mtmdphd) June 25, 2014

At the ASCO Annual Meetings, and others, journal editors often collaborate to publish peer-reviewed manuscripts immediately after presentation.

When this works, it can be an effort to bring timelines together and can allow for not only the dissemination of new information, but more detailed methods and often editorials to help contextualize data.

Michael A. Thompson, MD, PhD,

Medical Director of Early Phase Cancer Research Program,

Aurora Cancer Care

Medical Co-Director,

Aurora’s Oncology Precision Medicine Program

Disclosure: Thompson reports no relevant financial disclosures.

Reference:

Attai DJ, et al. Ann Surg Oncol. 2016;doi:10.1245/s10434-016-5406-x.