American Diabetes Association’s Twitter fiasco: Does it matter to patients?

The American Diabetes Association (ADA) sparked a social media uproar at its annual conference in San Diego earlier this month when it restricted participants from posting photographs of slide presentations on Twitter:

The response by conference attendees — especially those quite active on social media — was brisk, passionate, and hinted at “Orwellian” censorship. Medscape, who broke the story on the second day of the meeting, mostly focused on the response by physicians.

Conference Tweets: Good for patients?

It would be fair to point out there’s some selection bias at play here; after all, the survey was done via social media, and completed by people who use social media. Many — like Kevin Campbell MD, a cardiologist in North Carolina with a substantial Twitter following — felt the ban was ill-advised for these reasons:

• many who can’t attend the meeting rely on social media to follow new findings in real time
• most other major medical associations actively encourage live tweeting during their meetings
• online engagement facilitates dialogue from a variety of perspectives from around the world
• sharing data promotes innovation

Whether these rationale hold water or not will likely be debated frequently in the coming years, as more people attending medical conferences turn to social media.

But these arguments center on health care providers.

What about patients? Could such a ban affect the roughly 1 out of 10 Americans with diabetes?

Michelle Litchman is a Utah-based family nurse practitioner who specializes in diabetes care. She was unable to attend the ADA conference but followed it on Twitter so she could bring the latest information back to her patients.

“It’s impossible to be at every significant conference. There are just too many. Healthcare providers and patients rely on the collective sharing of conference pearls, which include photos, to engage in discussions. These discussions are focused on how to interpret and implement research findings, which — in turn — inform clinical practice and diabetes management. If we want to elevate healthcare, we need to give clinicians and patients access to up-to-date information.”

Amy Tenderich, who has Type 1 diabetes, agrees. “I really don’t see a downside to sharing openly, as that is also the world we live in now,” says Tenderich, who started the popular diabetes advocacy website, DiabetesMine.com, about 12 years ago.

“I can tell you that Twitter has definitely given many more people a window into these events. And I believe it helps patients to know what is happening in the field, to have hope, and to be able to look for research studies to potentially be involved in.”

Get the message out! Fast or slow?

If live tweeting from a conference actually creates a pipeline from researchers’ up-to-date findings, through health care providers, and ultimately to patients …this raises two important issues that I did not see brought up in any of the news coverage I saw of the Twitter debate (such as this strong Kaiser Health News piece that emphasized possible corporate influence over the ADA policy). First, how often is there truly “cutting edge” information from medical conferences that needs to be disseminated ASAP? Second, what are the implications of globally disseminating new findings that have not been peer-reviewed or meticulously vetted for publication?

“In theory, rapid and early dissemination of new research findings — both to the medical community and the lay public — may help to get appropriate care to patients sooner, and help important ideas spread,” says Michael Hochman MD, an internist and director of the Gehr Family Center for Implementation Science.

“In practice, however, it seems that the dissemination of early stage research findings often leads to the cart getting out ahead of the horse. It’s hard to know where the optimal balance lies. There are clearly benefits to immediate communication, but there are also real risks that preliminary, un-adjudicated results will be taken out of context. And there are countless examples of new medical treatments and tests becoming widely disseminated before the data support their widespread dissemination.”

Case in point: earlier this month we reviewed several presentations at the world’s largest cancer meeting (ASCO) that generated significant mainstream and social media buzz, but clearly did not live up to the hype. Some of it was downright misleading. Did these findings make their way through social media to ultimately become topics of discussion between patients and providers?

Over the years we’ve written about many other examples of news from scientific meetings that wasn’t ready for prime time:

• This highly touted “landmark breakthrough”  presented at the Alzheimer’s Association International Conference
• A “phantom study” which supposedly came from the American Association for Cancer Research (but actually didn’t)
• An incredibly misleading piece of news from the Society for Maternal-Fetal Medicine’s annual meeting

Clearly, we need to consider the potential consequences of rapidly spreading unfiltered misinformation via social media. Likewise, is there an argument to be made for not tweeting preliminary results and waiting until they are published? Certainly, the possibility of doing harm seems very real.

Democratization at a cost?

This Twitter debate at the ADA meeting in San Diego may very well become a bellwether for both the benefits and limitations of social media in broadcasting health care information.

As they stand now the bookends seem to be — on one end — an ideal of a democratization of access to information that flies in the face of tradition and promises open dialogue, open sharing, and accelerated innovation — and on the other — a push to protect property rights (doctors, drug companies, and associations) that on the surface, at least, seems to be primarily financially motivated.

The ADA stance centered on “unpublished data” and intellectual property is a curious one. If the abstracts from the conference are available online, and the data is publicly presented at the meeting, what is it about tweeting the same information that concerns them?

Of note, after the meeting the ADA promised to “re-evaluate” it’s social media policy and “our legal obligations to the researchers.” It was not made clear what those legal obligations were, and if they involved not just the researchers, but also the funders of research.

But I suspect what might become rather neglected as this story evolves is the issue of spreading unvetted findings, and how that can mislead both doctors and patients.

This very well may be the most important consideration of all … especially for patients … and may not initially appear to be associated with costs, but will ultimately prove very costly in every sense of the word.