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Social Media Alters Medical Research Priorities

Social Media Alters Medical Research Priorities

The power of social media and the Internet can influence medical research priorities, according to a paper published in the scientific journal Nature.

A case in point is a controversial multiple sclerosis treatment and demand for clinical trials in Canada.

In 2008, Italian surgeon Paulo Zamboni came up with the theory that MS is not an autoimmune disease, as widely thought, but a vascular disease caused by vein blockages in the brain. His procedure to unblock those veins is called the “liberation procedure.”

His small study and theory got little press or attention until activist groups in Canada took to the Internet in large numbers, forming more than 500 Facebook pages, groups, and events around the liberation theory, with tens of thousands of participants.

Newspapers around the world followed the story and people with MS clamored for more information and access to the liberation procedure.

Researchers at Memorial University in St. John’s Nfld., and St. Michael’s Hospital in Toronto say that this attention spurred a national debate regarding public funding of trials and whether MS patients should have publicly funded access to the liberation procedure.

According to a press release, none of Canada’s MS physicians or researchers, or the Multiple Sclerosis Society of Canada have endorsed either idea, and several studies failed to replicate Zamboni’s results.

The paper’s authors, Dr. Roger Chafe, director of the Janeway Pediatric Research Unit; Dr. Arthur Slutsky, vice-president of research at St. Michael’s Hospital; and Dr. Andreas Laupacis, executive director of the hospital’s Li Ka Shing Knowledge Institute wrote:

“Indeed, the case indicates the unprecedented pressures scientists, politicians and funders worldwide can now face to alter research priorities even in the absence of credible scientific evidence.”

They also said that in this new social media environment, researchers and clinicians need to engage more actively with the public to articulate the importance of science in determining the benefits and harm of novel treatments — and to ensure that patients’ concerns and priorities are heard. Unconventional and unproven treatments have long been proposed and tried for many terrible diseases.

“Now tools such as Facebook and YouTube make it considerably more likely that patients learn about such therapies, without necessarily learning about their potential limitations.”

More efforts are needed to improving the scientific literary of the public, politicians and the media, the authors wrote, and to engaging a public that is no longer deferential to experts.

Related Reading on Care2

Study Questions MS Liberation Theory 

Longing for Liberation

Additional Information
National MS Society: Studies in 2011 Could Decide MS Theory’s Validity
University of Buffalo Study Results

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Image: photoxpress.com


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24 comments

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10:43AM PDT on Jul 3, 2011

interesting

3:05AM PDT on May 3, 2011

This goes to show that information is good, because people want it. But to make sure, please have a big enough sample or enough independent research to make your claim valid.

12:34AM PDT on May 3, 2011

Interesting and worrisome.

1:15PM PDT on Apr 30, 2011

It is 2011. If anyone is doing animal research, they should be banned from funding. When there are so many alternatives.
Plus, SHAME ON THEM!!!

7:46PM PDT on Apr 29, 2011

Desperation can make people go to extremes. More research should be conducted before making this widely available.

11:36PM PDT on Apr 28, 2011

About those studies that "failed to replicate".... they "failed" because they weren't done using the same testing methods. And please take note of the word "few." There are others who ARE achieving the same test results with the same type of testing. CCSVI is making tremendous waves within the medical community and it is gaining the support and interest of doctors around the world. Doctors who have normally sat back and waited for "someone else" to do the research have been prompted by patients all over the world to take a second look. This has resulted in valid, peer-reviewed* medical research. And the results of that are very promising for MS patients.

The point here isn't that social networking is "changing" research - the real point is that social networking can be used for shining a light into the dark corners of research and bringing the information out for all to see. That illuminates hidden agendas that have been historically kept from the public. Like staged, big pharmaceutical "research" test, for example.

Those who believe that the medical industry, by large, is altruistic are fools. It's a huge industry that is motivated more by money than anything else. Social networking helps even the playing field for those rare, special doctors and researchers who care beyond their paychecks.
And when that happens, it's the patients and those who love them who benefit.

* look it up

10:54PM PDT on Apr 28, 2011

"...and several studies failed to replicate Zamboni's results."

Obviously more research needs to be done.

10:53PM PDT on Apr 28, 2011

Liked your gentle sarcasm Patricia R. It made your point well!
I leave grinning...

8:37PM PDT on Apr 28, 2011

What? People are beginning to distrust the high priests of medicine? Because they tell us one thing this year and another thing the next year? Because they insist that animals are the thing to study to find cures for humans? Jeez, what is the world coming to?

7:37PM PDT on Apr 28, 2011

this article seems to be implying that this treatment does not work. that is not true. it works, but only for some patients. just like many other diseases, one size does not fit all. just because it isn't a cure-all doesn't mean it isn't any good.

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