Monthly Archives: July 2008

Irresponsible health news reporting redux: the CBC on bone density & breast cancer

Can you stand to hear me kvetch again about irresponsible health reporting?

Today it’s the CBC (among others), whose health headline screams: Bone density level may act as predictor of breast cancer

It’s one of those articles without a byline, and the nameless reporter who penned this brief article clearly has no idea what they are talking about. But I guess fearmongering is always a good story-seller, so they wrote an article anyway.  They must have been in quite a rush, however, as not only is this yet another article written based only on a press release about a forthcoming article, the press release isn’t even quoted correctly.

The article begins:

In addition to mammograms, ultrasounds and blood tests, doctors may have a new tool in their breast-cancer-screening arsenal.

Off to a bad start. Bone density testing is not used like a mammogram or ultrasound, both of which are used to detect masses that may indicate cancer. I mean they’re all imaging tests, but there is nothing in bone densiometry that can indicate a suspicious lump in your breast for investigation. It seems that the article in question here is about screening for risk factors, which one could liken to blood tests if you’re talking about the small minority of breast cancers that are linked to the BRCA 1 & 2 gene variations found in 0.1-0.6% of the US population…but even that is a stretch.

The article about the unseen-article states that:

In the study, 10,000 post-menopausal women with an average age of 63 were studied in 40 health centres in the U.S.

without mentioning the critical context that this study was done on Women’s Health Initiative participants and is part of the WHI study backlash/follow up wave we are currently riding.

The CBC delivers the article punchline that:

Higher bone mineral density, which is governed by hormonal levels in a woman’s body throughout her lifetime, may lead to a higher a risk of breast cancer.

Without mentioning the CRITICAL fact that the study was funded by the Eli Lilly Company.  Lilly, incidentally, makes Raloxifene (aka Evista, Keoxifene), a newish bone density drug that – unlike the older bisphosphonate class of bone density drugs – may reduce the risk of breast cancer.

Wait, you mean to say that a study that says that high bone density could be linked with higher risk of breast cancer, funded by a company making a drug that builds bone density while allegedly decreasing risk of breast cancer might be victim of conflict of interest? Crazy.  </sarcasm>  Of course, we can’t evaluate for ourselves because the full article isn’t available…but we’ll get to that later.

Raloxifine, of course, has been struggling to gain market share against the older bisphosphonates in the face of a black box warning (for Increased Risk of Venous Thromboembolism and Death from Stroke) and multiple FDA warning letters for direct-to-consumer advertising practices in violation of federal guidelines (and if you know how rare it is for the FDA to actually send these letters, you know these must be rather egregious violations!). Not hard to imagine that the maker of such a drug might wish to have some studies encourage new prescriptions.

It would have been nice – ethical even – to have some context for this article’s findings: not only the study’s funding source, but also an idea of how prevalent the problems of osteoporosis, breast cancer, and cardiovascular disease are for postmenopausal women.  Want it?  It’s not hard to find (pdf here). Almost 39% of deaths among women 65+ in the US are due to heart disease or stroke.  19.3% are due to all cancers combined.  1.8% are due to unintentional injuries, and even if you attributed every single pneumonia death to a fracture and hospitalization (common but certainly not the only way to die of pneumonia) that only adds an additional 1.6% of all total deaths.  While personal and family medical specifics make a lot of difference in terms of the weight given to risk factors, it’s a no-brainer that cardiovascular events should be a bigger concern than bone fractures as far as preventable deaths in postmenopausal women.  It’s not rocket science here; I’m a librarian not a doctor.  Finding this info took only a mere Google search, not even a single subscription database.  A health journalist should be able to provide this context too.

Finally, in case you were a CBC reader who happened to be health literate enough to question the, er, thoroughness, of the news clip and wanted to go to the full article to read it, the CBC includes a final sentence:

The study is published in the July 28 issue of Cancer.

This would be quite helpful, were there a July 28 issue of the journal Cancer. However, Cancer is published on the 1 and 15 of each month.  As of today there are not any “early view” articles released on the 28 either, nor does this article appear in either the July 15 or August 1 issue. Way to fact check, CBC.

(For those who are interested in the actual study, please note that this article should be found in the September 1 issue of Cancer.)

A better example of quick but accurate health reporting from a pre-publication press release can be found here. CBC, please take note. You’re supposedly the national public broadcaster.  I expect better.

Is it too impolitic for me to say that I hope the good folk over at Media Doctor let the CBC have it over stuff like this?  Hmm…perhaps what I ought to be doing is talking with fellow health librarians about how we can better reach our health beat journalists in order to make it easier for them to write accurate articles. Okay, okay, I’ll do that.  But I’m still gonna kvetch about irresponsible reporting in the meantime.

-Greyson

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Filed under gender, Health, media democracy, publishing

DTCA 2.0 & RareShare

I know, I know, everything is “such and such 2.0” now, and it’s getting really old.  I agree!  However, this really is “2.0,” as direct-to-consumer advertising (DTCA) of pharmaceuticals has officially moved from being all “push” media into its own special social networking universe. Check it out:

The Toronto Star called my attention to the social networking website http://www.RareShare.org last week. The uncritical article by the “Faith and Ethics Reporter” acclaimed RareShare for creating online support for the “forgotten people” who have diseases so rare that there are no local face-to-face support groups.  Call me cynical, but I wish the article went a little heavier on the ethics and a little lighter on the faith in altruistic corporate goodwill.

The RareShare site is tight-lipped about its corporate sponsors. From publicly accessible information, we know that the 2 founders of the site are U.S. business guys with specialisations in high-growth tech and biotech and communications. We know one of the corporate partners behind the RareShare site is Nutra Pharma, currently testing a drug for the rare disease adrenomyeloneuropathy.  And we know that, in addition to “moderated” (by whom?) discussions in communities organized by disease, the site plans to have doctors (presumably those who are friendly with the corporate sponsors of the site?) holding online Q&A sessions with community members.

The Privacy Policy is a bit odd, in that it appears to have been written for another website. ?? They collect your email address and track your travels in order to improve their page, customize their content to you, etc. They’ll remove your name and phone # when they share your info with other companies. They use cookies, and record session info, “such as items that consumers add to their shopping cart”?  Shopping cart?  Huh?  If you give your telephone #, they’ll only use it to contact you regarding orders you have placed online? What kind of a website is this anyway?

It is perhaps worth noting that the RareShare defintion of “rare” is considerably broader than some other lists of rare diseases, including such conditions as gestational diabetes, which occurs in about 4% of pregnancies, according to the American Diabetes Association. According to the Canadian Organization for Rare Disorders, “A rare or “orphan” disease affects fewer than 1 in 2,000 people.”  While expectant mothers with gestational diabetes may legitimately feel the need for more support, they are hardly living with a rare disease.  The inclusion of such common ailmentsparticularly ones such as diabetes that are hotbeds of new pharmaceutical interest, and sometimes lead to ongoing monitoring and medication for the rest of one’s life – do raise a question of drug company profit motive.

It’s all not necessarily fishy, but it is a perfect setup for embedded DTCA with a social environment created to reach vulnerable and isolated populations. Sort of makes me want to lurk around and see what goes on once things get kicking in their forums…

…So I admit it: I did just that. Here’s my report. The site is so new that there’s not much there yet, so it’s a bit hard to assess where it’s going.  There were about 160 members as of when I peeked in, most of whom appear to be patients or family members of patients. These individuals post seeking help, advice, and connection with others.  Many of them are disclosing their personal stories: their ages, location, when they were diagnoses, what drugs they’ve already tried, etc. They join ”communities” of diseases based on their actual or suspected diagnoses.

Then, there are 2 members who appear to be doing far more posting then everyone else: one of the 2 site founders, and the CEO of a drug company.  The site founder has joined several communities and posted welcome messages in the forums.  The CEO has similarly joined many communities and in some he has posted messages such as:

“We’ve found that an already existing class of drugs is effective about half the time in XYZ syndrome. Please contact me for details of our Next Generation Disease Management service.”

“We think an already existing class of drugs may help in XYZ disease. Please contact me for details of our Phase IV trial.”

”We think already existing drugs may supplement standard chemotherapy and radiation treatment for XYZ cancer. Please contact me for details of our Phase IV trial.”

In addition to clinical trial recruitment, there is already some advertising for lab tests, for example Designer Diagnostics test kits of Nontuberculosis Mycobacteria (NTM).  Each disease community “home” has a link to more information about the disease.  Many of these pages are still pretty empty, but in the case of a few, this link leads to a full page that does not document the source of most of its information.  On the NTM disease information page, for example, under “diagnostic tests” there is only one brand of test mentioned.  If you follow the link to more information about the test, you can read about why this test is allegedly better than other tests, and you can follow another link right to the website of the manufacturer of the test.

Annnnnd, if you follow enough links on the Designer Diagnostics website, you can eventually get to the fact that they have a parent company.  This parent company, unsurprisingly, is the very same Nutra Pharma that you may recall is one of the corporate partners behind RareShare.

What a coincidence.

There is a clear and present need for more support and networking among patients and doctors dealing with rare diseases. If the public sector is not going to provide this type of health care, information and support, it is natural that the private sector will naturally seize the opportunity. We should not for a moment, however, forget that firms, unlike public health infrastructures, work from a place of their own bottom line and fiscal responsibility to their shareholders. For them to actually act out of total altruism and concern for the patients would be a conflict of interest.

– Greyson

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Filed under Health, privacy, privatization, technology

YouTube-Viacom lawsuit and IT-ignorant government

If you’ve heard about this week’s court order (ArsTechnica plain-English breakdown here) in the Viacom-YouTube lawsuit, you probably already know it makes a parody of privacy. It clearly states for the world that corporate IP such as search algorithms should be held in the utmost confidence. However, concerns over the revealing of personal information such as location, login names, and video viewing history are really just “speculative.” (This despite personal video usage history being explicitly protected by U.S. law.)

Now I may be a cockeyed optimist, but I don`t think Judge Louis Stanton had any nefarious intentions in making this ruling. I think Stanton is just the latest high-profile example of a government representative exercising government power over information technology without understanding how IT works. (Katie blogged about this same problem back here.)

The EFF`s Kurt Opsahl picks apart the court order in a nice blog post that really calls into question whether Judge Stanton understands IP addresses, user IDs, video technologies of the 21st century, and data protection legislation. The Washington Post`s Michael Arrington points out that Stanton graduated from law school over 50 years ago, so his ignorance in matters tech should not be shocking.

We have a similar problem with legislators. Even our very well-intentioned Bill C-552, aka the Canadian Net Neutrality Bill, has shortcomings that I can only assume are the result of MP Angus not being quite well informed enough. Yes, C-552 is on the right track, but…it could be better with a little more information and consultation with IT-literate stakeholders.

Of course, our largest Canadian example, hanging directly over our heads at the moment is Copyright Bill C-61, aka the Canadian DMCA. Anyone who listens to the CBC’s Search Engine knows that Industry Minister Jim Prentice (who has already been embarrassed by a wikipedia bio editing blooper) doesn’t have a clue (podcast here) about what the copyright bill really means. (Oddly, that show ended up being the last ever for Search Engine.) Talk about an IT-illiterate making telecom policy; sheesh. It would be funny if the stakes weren`t so high.

C-61 is actually a prime example of the dangers of tech-illiterate government, because it is the type of legislation that, if passed, will likely spawn lawsuits similar to the Viacom-YouTube in Canadian courts. Which can then be presided over by judges who, in turn, do not understand the way technology works.

IT-ignorant lawmakers make technology laws, and IT-ignorant judges interpret those laws when large corporations battle against scary new paradigms or information dissemination…it`s almost enough to make one become a luddite, merely in order to protect oneself.

Then, of course, one might be qualified for a technology-related government appointment.

-Greyson

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Filed under business, copyright, digitization, government, IP, privacy, technology, Uncategorized

Real Parents and Ideal Patrons

I`ve had several people ask me to expand on my third point from my Why I`m not a children`s librarian post. Here`s a little bit more on the topic of our frequent shortfalls in achieving social justice orientation in youth services, and my personal experiences with librarians shaming me without realising it.

“If their kid is at daycare all day, the daycare provider is really the parent anyway.”

My blood ran cold when she said that.

I thought of my son, in daycare at that very moment so I could be there in that library meeting, and held my breath as well as my tongue.

Not that I hadn’t heard statements like that before. Not that I considered myself especially vulnerable to such judgments.

I just wasn’t expecting it there – from a “friend” and colleague of mine, at a meeting of a team of children’s librarians specifically dedicated to providing culturally appropriate and accessible outreach programming for socially excluded children and families. The topic of discussion was how to extend outreach library services to go past the child to influence the whole family, so that parents might, say, bring their kids to the library.

And what I really didn’t expect, from that group in particular, was the fact that when one member said something outrageous like the above statement, no one else in the room spoke up. To the day I don’t really know if it was the dreaded librarian “niceness” striking again (inhibiting our ability to hold ourselves/each other accountable), or whether no one else thought she was being offensive.

I was a student intern. They were allowing me to sit in on their meeting, so I could learn. I didn’t feel like I could interrupt and intervene at that time. But I certainly did learn.

***

The dominant library paradigm holds very particular cultural conceptions of the ownership/belonging/responsibility of children. These notions are largely based in euro-colonial and neo-liberal values of the family as isolated, self-sufficient unit.

Even in our progressive and outreach programs, are we really listening to our communities, parents, families, and empowering them to make our services their own?

***

“The best library users, the ones we love to work with, are the parents who already bring their children to storytime. They are the ideal. I love to work with them.”

A library school instructor, one whom I sincerely like and respect, said this in front of a class I took.

Again, I was floored.

My child has never been to a library storytime. I have been a working parent since he was 2 weeks old, first lugging him on my back to my office, and then, too soon for my liking, sending him to daycare. My local library branch does not hold weekend storytimes for working parents. Even the summer reading club events are during weekday workdays, much to my child’s dismay.

I always garnered compliments from my library supervisors, but they don’t know my dirty secret – that I am The Non-Ideal Parent as a patron.

Shh…don`t tell!

***

We are beginning to acknowledge that “the ideal patron” is a problem – that this notion is culturally biased and exclusive; that we should be questioning it. I say this because we as a discipline have published papers to this effect, bestowed honours upon some individuals who have championed this message, and sometimes even committed funding to novel projects that work toward a more just community ownership of libraries.

But trickle down takes a long time, when it works. Will the status quo for plain old regular librarians – ones not leading special programs or “moving and shaking” their institutions – ever change?

***

Oh, but I didn’t mean you. Your son is wonderful, so smart.

Yes, and I don’t “look Jewish,” right? Let me guess, some of your best friends are black and gay?

Putting down who I am, my history and identity, and then telling me I am better than everyone else like me is not a complement.

I am not an exception.

Or rather, we are all exceptions.

I am a bit uncommon, in that I was a low-income single parent who went back to school and became a librarian. But I was certainly not the only one who met that profile in my library school intake of 40 people.

Really, it is highly likely that I am only unusual in following this path because of my privilege. Coming from a family with higher education and economic privilege, It was relatively easy to make the decision to go to grad school and change my situation. I was able to see that option and take the necessary path to get there, yes. However, the important part of this story is not so much how I got where I am now, but what I know of where I was a few years ago.

I know, I know, I’m different from all the other Black/Jewish/queer/Asian/poor/Latina/whatever people. The other daycare parents. You didn’t mean that slur to apply to me.

Isn’t that line getting old by now? Isn’t it one libraries shouldn’t be using anyway?

-Greyson

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Filed under community development, LIS education, public libraries, racism, The Profession, youth