By Karen Owen
Here’s part of the introduction to my story which led the CTV Calgary 6 pm newscast on December 16, 2010: “After incredible public pressure, the Alberta government is paying for a one million dollar study into what’s called the Liberation Treatment”. Public pressure leading to funding for a scientific study on a controversial treatment for Multiple Sclerosis?! That’s not typically how it works.
Medical researchers usually spend hours and hours on grant applications attempting to convince people and organizations with money to fund their research. Public pressure usually isn’t part of the equation; in fact the public rarely even knows about the basic research or the never-ending quest for research funding. However, in the case of funding investigations into the Liberation Treatment, also known as CCSVI, patient advocates are using the power of news and social media extremely well to influence research funding and gain access to the treatment through the Canadian healthcare system.
I believe the announcement of this one million dollar study highlights bigger issues—the DIY culture and its impact on the democratization of the news media.
First, a little background, the so-called Liberation Treatment is a scientifically unproven medical treatment for M.S. that has received a great deal of attention from Canada’s news media. The news coverage has relied heavily on patients and patient advocacy groups as the primary sources of the stories, and patients’ perspectives of the benefits of the treatment dominate news coverage. I have reported on the stories of several patients who have undergone the treatment overseas and are really pleased with what they consider its success. Their stories are compelling.
Ginger MacQueen told me in an interview, “it changed my life, before the treatment I thought I was on death row”. That’s a tough story to ignore—and the patients are persistent and driven. They usually email the station with their success stories, or it’s easy to find them online, often on Facebook.
What makes these stories different from other medical stories I do, is that the stories on the Liberation Treatment often do not include any doctors; none of the M.S. experts in Calgary want to talk on TV about the treatment, not yet. Traditionally medical authorities in news coverage are medical doctors, government officials, and well-established patient advocacy groups, in this case that would be the M.S. Society.
But now, grassroots patient groups are attracting the news media by staging national patient protests to demand access to the treatment and funding for research, and patients going overseas for this controversial treatment are sharing their experiences with the public via the news media and the Internet. I see this as an example of our participatory culture which is shifting the news audience from passive consumers to active participants who influence control over the content of news.
Traditional news media are struggling to maintain their role as gatekeepers of information; gatekeepers that often rely on traditional authoritative sources. The news coverage of the Liberation Treatment is an example of the democratization of the news media.
News organizations can’t ignore this story, it’s out there because anyone with a little know-how can create their own website, start a blog, or post a video on the Internet.
One M.S. patient keeps me, as well as the Premier of Alberta and Alberta’s Health Minister, informed of her progress following the Liberation Treatment. Her latest e-mail says in part, “it is truly the BEST MS symptom treatment I have experienced in the 25 years since diagnosis”. Citizen journalism has created a struggle between the mainstream journalists, who once had the privileged position of controlling the production of news stories, and the formerly passive audience now empowered by the availability of new technology, sharing information almost at will.
So what am I doing as a journalist in this struggle for power? I try to ensure these stories don’t sound like testimonials or even evidence that the treatment works. Instead, I treat them like any good news story, highlighting the conflict, in this case the inherent conflict of having an illness such as M.S. and the drama of seeking a treatment that is controversial. I’m also there covering the protests at the legislature, seeking patient reaction when the federal Health Minister announces what the federal government will and will not do in terms of funding.
This is more than just a struggle for journalists. I recently spoke to V. Wee Yong, Ph.D. at the University of Calgary, who is also on the medical advisory board of the M.S. Society. He supports funding research into the Liberation Treatment, but he’s concerned about diverting funds that could be used for more mainstream science. Yong says the media attention is good “in the sense it has also brought focus onto M.S. but where it has been somewhat troubling has been the immense attention it has gathered at the expense of many other potential advances in M.S. research and treatment”.
I often look for real people to feature in my stories, but now some of those real people want more control over the story, which is not necessarily a bad thing. However, journalists still need to offer balanced stories, which are accurate, timely, and written with as little bias as possible. Professional journalists need to develop methods of incorporating and accepting the new age of participatory news without giving up total control and journalistic standards—especially when they’re covering controversial stories about unproven treatments.
Karen Owen has been working at CTV Calgary for the past twenty years, the past dozen as a health reporter, and is currently completing a Master of Professional Communications at Royal Roads University.
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