A quagmire rife with rhetoric
DRUG BUST by Alan Cassels
• The people’s briefing note on prescription drugs
It pollutes our water, warms our planet and destroys the environment. Or…it provides jobs, reduces our dependence on foreign oil and delivers economic growth. It’s either a godsend or evil incarnate. What’s the “it” we’re talking about here? Fracking.
Of course, I mean hydraulic fracturing, the controversial method of extracting natural gas from shale rock layers deep within the earth. Because of new technological advances in drilling – and tons of high-pressure water and chemicals – fracking can extract natural gas that was previously unreachable.
Now, I’m not a geologist, but the controversies swirling around fracking are an apt metaphor for other troubling things happening underground, which can have a profound effect on our lives.
Last month, I reported on a big push by a consortium of businessmen and researchers to sell BC’s collective health records to for-profit industries (i.e. drug or insurance companies) so BC can “become a global centre for excellence in the use of data to drive public and individual health innovation.” The manifesto known as the “Data Effect Declaration” caresses you with soothing rhetoric and gentle assurances that BC’s “unique healthcare data assets” would only be used in the public interest. Sadly, the rhetoric barely camouflages the rationale behind this initiative, which is to allow private, for-profit interests to make truckloads of money by giving them access to the province’s public health information.
The Therapeutics Initiative’s Colin Dormuth is a Victoria researcher who already uses this information to study drug safety. After my article came out last month, he tweeted that allowing for-profit companies to mine our health data amounts to “data fracking.”
As he explained, “Data fracking is just a tongue-in-cheek way of referring to bias in industry funded research. The petroleum industry sings the praises of fracking, but there is no denying it is controversial. The same can be said about drug companies using government databases. When it comes to health care, people want their data to be used only in their own interest.”
Right now, we have fairly strict rules in BC around not commercializing our health data and not allowing it to be used for market-oriented research. But all that could change.
How would the drug industry use our health data? Take for example a class of drugs used by almost 25% of the population in BC: antidepressants. What if a company wanted to use BC data to examine access to mental health services and drug utilization by region, to find the areas where low and high prescribing is happening? Sounds fine, right? Sure, until you realize the company examining those data is really only interested in how it can help them refocus their marketing efforts and send more drug reps to the doctors who need further ‘education.’
In the last two decades, there have been many stories about data manipulation and clinical trial corruption in drug company-sponsored research. While most research is done to very high standards, when profit is the ultimate goal the incentives to skirt rules and carry out unscrupulous and even illegal research and marketing are high. And the billions paid by the drug industry in fines and penalties for illegal marketing activities in the last 20 years does not give us a lot of confidence. (See the report at http://www.citizen.org/hrg1924) Do we trust the research produced by an oil company who is fracking near our water supply, denying all the while that their activities won’t be tainting or polluting? We would do so at our peril.
To dig further into this, I talked to Dr. Joel Lexchin, who teaches health policy at Toronto’s York University. He is currently on sabbatical in Geneva, writing a book about the pharmaceutical industry in Canada. As someone who has followed drug company machinations in Canada for more than 30 years, I wondered what he thought about the “Data Effect Declaration” which promises to “quickly capitalize on our unique data assets.”
Lexchin sees the main problem with selling BC’s health data to for-profit enterprises is that they might not do the kind of research we need done. He noted, “This could be a good thing, but who decides on the priorities?” He feels the only way selling our data would really work is to have an independent body deciding on the priorities and that a “broadly representative panel of people, unaffiliated with the drug, device or insurance industry, would make the decisions on which projects go forward and which ones won’t.” He emphasizes the need to include everyday citizens, patients, academics and labour representatives – essentially, “people who don’t stand to make money or who are not affiliated to anyone that would.”
Some jurisdictions, like the UK, use citizens’ advisory groups, considered the best way to ensure the process represents the people most likely to be affected by the research, not those most likely to profit financially from it.
Clearly, the drug and insurance companies would love to get their hands on BC’s public health data and exploit them, but in Joel Lexchin’s opinion, “It boils down to who has the money to buy or analyze the data.” For him, in this scenario, “Industry will always win over public interest groups.”
The BC Ministry of Health has a dismal record of facilitating true public input into drug decision-making. A panel created a few years ago to advise the government on our public drug program, Pharmacare, was so stacked with industry and business representatives (including members of Canada’s brand name pharmaceutical association – the equivalent of having Shell Oil and BP executives setting resource extraction policy) that the recommendations which emerged made BC a laughingstock among the rest of the country.
What could be done to ensure that opening up access to BC health data is done in the public interest and not just to sell more drugs to more people? The guy who coined the term “data fracking,” Colin Dormuth, says, “In the end, I think it is impossible to provide an ironclad guarantee. I suppose industry could donate funds to public granting agencies to support research. In that scenario, the researcher reports to a Crown agency instead of a company.”
Recent experience with CIHR, the Canadian Institutes of Health Research, does not offer much assurance that this could be kept clean either. For example, the main federal agency responsible for funding Canadian health research has people on its board of directors with ties to drug companies. CIHR makes researchers seek out ‘partners’ in competitive research grants so guess who they go to? That’s right – because the drug companies might be the easiest way to latch onto the CIHR teat. The result is that health research in Canada increasingly focuses more and more on patentable drugs and devices and less on the social, non-pharmacologic or alternative methods of dealing with sickness and disease.
The folks behind the Data Effects manifesto have noticeable ties to the pharmaceutical industry and business, with virtually no one with a “public interest” perspective at the table. But I could be wrong because BC’s health minister will be at their conference in December, most likely to announce (we think) government’s plans to open us up to data fracking.
One does have to wonder how much we should be charging data fracking companies who, even as they strenuously insist their practices are safe, may be tainting our drinking water? As Colin Dormuth tells me, “Any economist will tell you that the value of something depends on who owns it.” If you own the land, you decide what the frackers need to pay. If the frackers own the land, then we’d have to pay them not to do it.”
Colin adds, “The two values are different depending on ownership and financial means, maybe infinitely so. In the case of the public databases, you need to ask the people their price because they own it.”
So what is our price? Is the collection of British Columbia’s health data repositories a valuable and unique public asset to be used to improve public health or is it to foster economic growth? Stand by for even more soothing words and assurances, delivered with much “enthusiasm and respect” that data fracking is good for us, creates jobs, protects the environment and doesn’t contribute to global warning.
You almost want to believe them.
Alan Cassels is a drug policy researcher in Victoria. You can follow him on twitter @AKECassels or at www.alancassels.com