BMJ article about the CIHR trials policy disappearance

More follow up from these previous posts about the surprise disappearance of the Policy on the registration and results disclosure of controlled and uncontrolled trials funded by CIHR.

Thursday, the British Medical Journal (BMJ) published a News article by Ann Silversides, titled: Withdrawal of clinical trials policy by Canadian research institute is a “lost opportunity for increased transparency.”

For consistency’s sake I must note my dismay that this BMJ article about open data is not freely accessible online. Open access is as open access does; journals who live in glass open access houses should be cautious about criticism, folks.

Since some readers of this blog undoubtedly lack subscription access to the BMJ, here are a  few choice quotes from Silversides’ article, interspersed with my commentary:

“The CIHR [Canadian Institute for Health Research] policy
certainly was leading the drive towards increasing transparency,”
said An-Wen Chan, a scientist with the Women’s College
Research Institute in Toronto and co-author of the Ottawa
Statement on Principles and Implementation of Clinical Trial
Registration and Results Reporting

If the institute’s policy is permanently rescinded, the result
would be “a lost opportunity for a federal funding agency to
make a statement that increased transparency is important for .
. . ensuring that publicly funded research has maximal impact,”
said Dr Chan.

I don’t know Dr An-Wen Chan, but I agree entirely. The policy seemed to follow naturally along the progressive path forged by the CIHR’s 2004 RCT registration policy and 2007 research access (OA) policy.

Trudo Lemmens, of the University of Toronto law school, said
the decision to remove the policy “sends a bad message.” The
TCPS-2 requirements are more general and vague than the CIHR
policy, and it is not clear who will implement and enforce
TCPS-2, he said.

Again, I don’t know Dr. Lemmens, but I agree that the rescinding of the policy sends a “bad message.”

Silversides also reports that:

The CIHR has recently been “in discussions” with Rx&D, the
trade association for Canada’s brand name drug companies, on
renewing the CIHR/Rx&D collaborative research programme
(which funds awards, grants, and clinical trials) and finding
ways “to improve the clinical trial environment,” Rx&D
president Russell Williams stated in an email.

I suppose what is an improvement to the clinical trial environment depends on your point of view. Making clinical trials more transparent, and thus more likely to be audited, by more sets of eyes, for human safety issues, seems to be an improvement to me. But if my primary concern was the ease of bringing new technology/product from trial to market, my perspective would likely be different.

Professor Lemmens, who has published widely on transparency
and clinical trials, said that at an international level, the
pharmaceutical industry has been critical of trial registration
and requirements about having to give details of results. He
speculated that “maybe it is not pure accident” that the CIHR
policy, widely regarded as pushing for more transparency in
clinical trial reporting, has been withdrawn “when there is a
clear push (in CIHR) to promote collaborative research with
industry.”

And this possibility that the timing of the trials policy’s disappearance might not be “pure accident” is exactly what we don’t want to think about when it comes to our national health research funder, with a mandate:

“To excel, according to internationally accepted standards of scientific excellence, in the creation of new knowledge and its translation into improved health for Canadians, more effective health services and products and a strengthened Canadian health care system.”

-Greyson

The metered Internet threat to innovation & access to information

Remember the early days of mass public access to the world wide web? Back when AOL was king, noisy dial-up modems were par for the course and having any graphics on a webpage was super-fancy? Remember in 1993 or so, when you’d connect to the Internet, download your email as quickly as possible, disconnect to read the text and write your responses, then connect and send your pre-written emails as quickly as possible? It’s the type of scenario today’s kids would find baffling and hilarious: clunky, unwieldy, expensive, and certainly not one that encouraged increased use of the technology.

Well, everything old is new again. The CRTC (Canadian Radio-television and Telecommunications Commission), Canada’s telecom regulator that brought us nearly-neutrality rules just a year ago, recently issued a decision on “usage based billing” or UBB (Telecom Decision CRTC 2011-44). And the meter on your Internet may well be back on – albeit measuring bytes rather than seconds this time around.

A lot of reaction to this decision is coming out, and more analysis will follow in the coming days, I’m sure. OpenMedia.ca has a petition up, Canadian news outlets are covering the decision (and reaction) widely, and online content providers are understandably furious.

I haven’t gotten a chance to comb through the decision in detail yet, and I have to take a couple of boys to the science museum shortly, but there are a few points I want to make right off the bat. I may be back later to comment further or clarify these quick notes.

1) UBB is not the same issue as net neutrality (unless #2 applies)

The reason usage-based billing sounds so appealing, so normal,  is that we do pay per item/metered amount for a lot of goods. We pay for utilities like hydro (hydro = electricity for you non-Canadians) on a metered basis, and many areas also meter water (although that is not without controversy). Frankly, the UBB idea is a brilliant example of big ISPs hearing the pro-neutrality argument that Internet should be treated like a utility and running with that concept, turning it to their advantage.

A lot of the same folk who were up in arms over net neutrality are upset about this UBB ruling. And they have good reason to be outraged. However, in strict sense, UBB is not in contradition with net neutrality (where net neutrality = slowing down of selected content en route to the consumer). My understanding of the CRTC UBB decision is that it is supposed to be content-agnostic, and only size-based. Now, this doesn’t make a lot of sense, policy-wise, anyway (as I will discuss below), but it’s not necessairly non-neutral.

However, metered use makes sense for goods for which we have  a finite supply, not for things like information, which do not require rationing. Economically speaking, information is a non-rivalrous good, meaning that my use of the good (say, a webpage, journal article or TV show) does not in any way prevent you from also using & enjoying the same good.

I know, I know, there’s that old argument about your pipes getting clogged because your neighbours are downloading too much big stuff all the time, but frankly Canadian ISPs have been given ample opportunity to show evidence of this overload, and none has materialised. In fact, the logs we did see during the net neutrality hearings showed the exact opposite of congestion, making it clear that this is just a cash grab. (I do want to make the point, however, that even if congestion were present – and eventually it may exist if ISPs fail to invest in their infrastructure – that does not mean that the correct response is to slow down Canada’s Internet in response. Other industries are required to upgrade their infrastructure over time as needs change or parts get old and fail.)

2) UBB is a potential neutrality workaround

While I think the intent of the CRTC  is allow metering of all Internet content equally within the same subscription plan, and to do otherwise is likely a violation of the still-untested CRTC net neutrality rules, there is a lot of scope here for ISPs to provide favourable conditions for content from which they benefit.

For example, an ISP may offer special promotional “exemptions” from UBB for content offered by their parent company – dinging, say, Netflix while exempting their own online TV/movie service. This isn’t throttling content in the “pipes” or charging a toll to content providers for content delivery, it’s charging a toll to users for content access. It’s throttling the consumer’s wallet.

3) UBB is a giant threat to access to information, and to innovation

Here’s where it gets really ugly. Imagine what it would (will?) be like when we are charged by the byte for information downloaded (and possibly also uploaded?) over our connections.

No one knows how much bandwidth they’re using so they minimize use, fearing fees. AJAX is no longer an asset; it is a liability and we disconnect from continuously refreshing websites to save bandwidth. The pressure is on for online content to be as compressed as possible, hitting the art community hard. Community wireless, such as building-wide wifi in co-op housing, becomes potentially pricey and hard to control.Schoolkids are no longer encouraged to post videos from the classroom to demonstrate and share learning. Employers start to police recreational Internet use more than ever. Coffee shops and other hotspots stop offering wifi all together, making life harder for freelancers, the self-employed, students and others without official workspaces.

Fearing the bandwidth limits on their personal subscriptions, the middle-class flock to libraries to do their downloading. Libraries cannot afford this. Libraries may not be able to afford current levels of bandwidth use, if metered, particularly academic libraries or those dealing with subject areas involving rich media (art, film, music…). I cannot over-emphasize the threat to public access to information via libraries here: libraries are currently THE places in society where anyone can access the Internet. If libraries have to limit this, ration it somehow, or lose this role, it will be a tragedy both for libraries and for the public who rely on library Internet. When public Internet access is limited or closed, public access to information, and therefore public participation in democracy, is seriously impinged. With the government increasingly moving to online-only forms, information, and dialogue with the public, how responsible is it to simultaneously move to meter Internet use?

We may move backwards in time, returning to network television for entertainment. Online course reserves could be pricier for the university than those old print custom course packages. We might actually revive the fax machine?!? Why would a country want to push its population back in time, when the rest of the world is jetting ahead with innovative multimedia content and new delivery systems? Hard to say. Just dumb policy-making? The cynic in my says it could be that those making the policy stand to benefit from old media technologies and fear the threat of the new. However we may drag our feet and try to slow things down within national borders, change and innovation are going to happen – if they need to happen elsewhere first, that will happen. Maybe the CRTC needs to attend Karen Schneider’s talk at MLA?

-Greyson

ETA – Well, that didn’t take long. The decision has already been appealed. Fasten your seatbelts!

Making the Case for “Public” Libraries

Ensuring library services are meeting the needs of community members is an essential requirement for library services.  By being accountable to our local communities, we ensure that within our restricted budgets, programs and services are continuously evaluated and adjusted to meet the changing needs of community.  Therefore, based on evaluation – we must be open to the challenges of shifting how we identify, plan, develop and implement library services.

I agree with John Pateman that libraries have entered a Pandora’s box, by solely relying on statistics to justify our existence – “The minute that we started to count everything and quantify what we do – from book issues to fines income – we created a huge stick with which others can beat us… the real story is not that book issues have gone down from X to Y, but that MILLIONS of books are still borrowed from libraries every year” (CILIP Update September 2010).  In theory, as John further discusses in his article, libraries in and of themselves are public good, and this fact should be justification enough for continued support of public libraries.

However, as we can see from the U.S. case, the library as a publicly supported institution, can come under attack.  One of the first sectors to come under attack during the recent financial sector created ‘financial crisis’ is the public sector (ranging from teachers and educators, to firefighters and police officers, to libraries – link for Illinois example).  As discussed by Naomi Klein in her timely book Shock Doctrine, Milton Friedman and the Chicago Schoolers’ are prepared to take advantage of public confusion during times of economic crisis.

**OF NOTE – See NYTimes article on Privatization of Public Libraries from September 26th, 2010

So What Should We Learn From this and How to Respond?

While libraries are public goods, we need to be able to be prepared to make this justification.. and there is no time like the present!!  So, how should we proceed?

I am not advocating for replacing current measurement tools used by libraries.  Many of the indicators which we are using are very powerful and meaningful output measures.  These measures, which are primarily frequency level quantitative measures (which are difficult for using in multivariate – causal based analysis), provide a measuring stick for usage of library programs, materials and other services.  They measure concepts such as circulation statistics, gate counts, program attendance, and other quantifiable items.  Funders and the public have been taught to expect these measures, and will continue to demand them.

As described in the toolkit (see chart below), evaluation measures should continue to include these measures.  However, in order to display the impacts that library services are having on community, libraries need to capture and frequently report the narrative (qualitative) impacts.  The advantage of doing this is that this form of evaluation ‘picks up’ on the nuances of the social and human component of library services.

For example, if 70 people attend a library program and if this number is used as the performance indicator – the number does not provide information on the impacts and outcomes of the interaction between library staff and members of the public, or between community members.  These interactions, impacts, and outcomes are already occurring – where library staff are involved in the delivery of services (either within the walls of the library or out in the community).  What is needed, are effective mechanisms for library staff to capture and communicate effectively, from the voice of community, the relevancy of library services in meeting community identified need.

At a minimum, this information will allow for improved service development and increased justification for continued public support for the social good public libraries facilitate within the community.  In addition, it will provide us with the information to show the relevancy of our services to our local communities.

A great resource which discusses how to measure the impact of library services is Evaluating the Impact of Your Library.

Final Thought

So as library systems how are we doing?  A quick measure of success to determine how well we are collecting honest community evaluation is to think about the pace of innovative new practices being implemented within library systems.  If we are doing a good job of collecting this information, collaborative community based evaluation, should lead to service changes based on community identified need.

~ Ken

Online drug advertising & the regulatory challenge

Between the (minor!) bike accident , the kid’s birthday, and being out of town for a bit, blog posting has gone a bit by the wayside the past few weeks. However, something that’s been much on my mind lately, and which I’d like to discuss here, is drug advertising online.

I’ve written various posts before about DTCA – direct to consumer advertising of prescription drugs – which is legal in limited form in Canada, and in much greater form in the US. I think prescription drug promotion of all sorts is a big social justice issue, and that DTCA is a significant and oft-overlooked consumer health info issue that librarians should have on our radar. When we talk about the Pew research on online health info seeking, social media, and “e-patients,” we cannot forget that profit-motivated companies are as interested in our patients’ online information behaviour as we are, just for very different reasons.

The Canadian “freedom of expression” lawsuit on this matter has been indefinitely adjourned, but I’ve come to wonder if perhaps debating the merits and perils of television and magazine ads may be rather passé in light of the Internet’s growing centrality as an advertising medium. Maybe CanWest was not just throwing in the towel on a lawsuit that was destined for failure (b/c the FOE argument was pretty weak), but also strategically abandoning old media. Nah, actually, I think CanWest is still pretty wedded to old media, but the rest of us aren’t. And we are the target audience for DTCA.

Now, I know some people (lots of them) still watch TV on TV, even with all this digital conversion business. But will they in a decade? Not so sure. Hulu has been such a huge success in the US, spawning constant rushes of hordes of international viewers to one proxy setup after another in order to see the latest episode of their favourite shows. It’s only a matter of time before online TV is de rigueur in any region with decent bandwidth & reliable connectivity.

The unofficial rules for online drug advertising have, to this point, basically been an extension of the TV advertising regulations. It’s debatable whether this is appropriate or not. I’ll take on whether the Internet is more like TV or more like the telephone in a separate post (soon! I promise!), but I think we can all agree that it’s not *exactly* like TV.

Many online ads, for example, require some active selection on the part of the reader/viewer, and are not necessarily as time limited as TV ads (and thus able to provide fuller information). Typical online drug ads today appear as advertisements in the margins of a website, and attempt to entice the reader into clicking them to go to a website with fuller information on whatever the condition/drug may be.

In a somewhat impressive attempt to be proactive (?), the FDA (US drug regulator) held a couple days of public hearings last month on the topic of online drug advertising. The 5-page list of speakers (pdf) was heave on pharma and health tech investors, followed by representatives of online services both general and health-specific, ranging from Google to WebMD. So that pretty much covers the people who want to advertise, and those who want the money from said advertising. Of note, there were reps of specific social marketing units within pharmaceutical companies on the docket, so Pharma is well aware of the stakes here (e.g. Sanofi-Aventis has a rep, and then the Sanofi-Aventis social media working group had a rep as well). Unfortunately, I could pick out only a very few advocacy/public interest groups, such as the Consumers Union.

To backtrack a bit, this hearing didn’t come out of nowhere, although it was not terribly well publicized.Back in April, the FDA issued warnings to some 14 pharmaceutical companies over their “misleading” online advertising. At issue was failure to fully disclose risks, and these letters focused on search engine ads (aka “sponsored links” in some search engine displays).

November’s hearings, however, were broader in scope, touching on not just search engine advertising, but also ads on websites, and – perhaps most significantly – in social media. This is excellent news, as we know that social sites are an ideal location for what I called “embedded DTCA with a social environment created to reach vulnerable and isolated populations” in my post about the “patient support” site RareShare a year ago.

So what? Where is this going? What does the Internet mean for drug advertising and patient protection?
Well, there some very interesting threads to watch as this policy story unfolds:

1. The Internet doesn’t do super well with national borders. If laws on DTCA are different in different countries, do they have to appear differently based on site host location? IP address of the end user? How? DTCA on television has taken advantage of lack of political will to enforce existing laws to broadcast US drug ads across the Canadian border. Will the Internet do any better? (Personally, I am doubtful.)
2. The Internet, however, does allow for end-user participation on a scale unprecedented by other media. Some people have voiced optimism regarding the potential for commenting and annotation to temper, force transparency upon, and generally “culture jam” drug advertising. Google’s SideWiki has received a lot of attention in this regard, but it remains fairly unwieldy to use and market saturation is quite low.
3. The whole net neutrality debate applies here, and the way this debate influences our view of the Internet will influence the way we feel about things like online advertising. Is the Internet a media for entertainment or communications? Is it a utility, which should be neutral and allow for participation from all, or is it a medium for consumption? We would feel quite different about picking up the phone and hearing an ad than we do about a commercial break from a TV show.
4. Social media can really blur the line between non-profit advocacy and for-profit promotion in a nasty way. It’s one thing to regulate what can or must be said inside a little “ad” box in the margin of a website. It’s quite another to regulate embedded personalities within a social media site, who are planted there to promote certain products. I will be quite surprised if these hearings/this process even touches on this issue, but variations on hidden advertisements are a phenomenon that’s well-known in the blogging world, maybe less recognized in some other social media fora (Facebook, where everyone is supposedly using their “real name”?)

-Greyson

p.s. During composition of this post I cheked the CBC news online, and lo and behold there was an example of DTCA right on the site. So I snapped a screenshot, of course, to stick up here. This is an example of a currently-legal “disease awareness” ad for erectile dysfunction, from the Health News page of the cbc.ca:

Caron’s LAC Modernisation message: huh?

(aka the blog post wherein I probably blow any and all future chances of working in government…)

Making the rounds of Canadian LIS (and presumably archives) listservs today has been Librarian and Archivist of Canada Dr. Daniel Caron’s “Message from the Librarian and Archivist of Canada: Modernization.”

As far as messages go, it’s kind of an odd one.

The message begins by promising to share the course for LAC he has charted, and ends by saying LAC should do what it was set up to do. Truly radical. Maybe some of this makes more sense to people with more inside knowledge of LAC? To me it sounds rather like the teacher from the Peanuts cartoons. (“Wa wah wa wa…”)

On my first skim through I was numbed by all the vague references to generally-unspecified issues, challenges, harmonizing and togetherness. The “today is the tomorrow you worried about yesterday” business in the middle was somewhat amusing, and the reiteration of LAC’s mandate (repeat after me: acquire, preserve, access; lather, rinse, repeat) and praise for LAC’s “brilliant past” were a nice acknowledgment.

On my second read through I realized that Dr Caron must be reeeally worried about LAC being seen as “relevant.” I mean, he mentions this concern no fewer than 4 times in the 9 paragraphs (which is, incidentally, the same amount of times he used the word “library” in the message):

1.      “Today, digital technology has radically changed our practices and expectations and, to remain relevant, we will need to tackle the issues, communicate and collaborate more than ever before with others who share our goals.” (para 1)

2.      “Our relevance in the medium and long term is also called into question in this new environment.” (para 3)

3.      “How do we remain relevant in an increasingly fragmented and to a certain extent uncontrollable environment?” (para 5)

4.      “…our relevance depends on our ability to implement the best work procedures and marshal the most effective and efficient combinations of available expertise.” (para 8 )

(all above emphasis mine)

What’s weird is that exactly the things he seems to see as threatening LAC’s relevance (digitization, preservation challenges, information overload, social media…) are the exact things that I see as making the case for the relevance of information professionals.

Nu? This is really the man in charge of our national library & archives?

I accept that I am of a different generation, cultural background, and academic discipline than Dr. Caron. I, for example, don’t feel “condemned to live in both worlds, analogue and digital, at the same time,” (<-emphasis mine; and I would say something more like privileged to live at this time of straddling the aforementioned worlds); nor do I feel especially burdened by the “daily challenges” of unspecified “social transformations” (unless by that he means corporate globalization? I do feel kind of daily challenged by neocolonialism, come to think of it…).

However, I do know a fair number of librarians and archivists from backgrounds pretty different from my own, and when they send me messages, I generally feel like I have a decent clue what they’re trying to communicate.

This, well, what can I say? It’s a totally weird message. Maybe Caron’s trying to prove that he really does get libraries and archives,  while just totally missing the mark?

…or at least that’s what I’d like to think, since the alternative would seem to be that he’s basically paving the road for privatization of LAC…

-Greyson

Unicorns don’t exist; net neutrality is just distastefully fair

The top story on the CBC News website this evening is “Net Neutrality doesn’t exist, CRTC told.”

Laugh or cry?

Internet congestion is inevitable and net neutrality does not exist, Canada’s internet regulator was told Monday at hearings on how internet providers control and manage internet traffic and speed.

But here’s the best part:

Congestion is a natural occurrence on the internet, partly due to unexpected events such as Michael Jackson’s death, said Don Bowman, chief technology officer for the network technology company Sandvine Inc.            

Got that?  It is Michael Jackson’s fault that you are being throttled! Hee.

According to the same CBC coverage, Bowman also asserts that deep packet inspection is necessary in order to keep VOIP from breaking up due to congestion.  I’m no ISP, but I have a hunch there are other options here…for example deploying other “shaping” technologies that don’t invade customer privacy, or the radical path of increasing available bandwidth.(On this note, I am quite intrigued by Scott Stevens’ suggestion “that some internet traffic management could be carried out by customers themselves rather than the ISPs” and interested in how that could work!)

What’s disturbing is that Bowman is not only acting as a CTO but speaking at this CRTC hearing, apparently without knowing that net neutrality is.  He is quoted as saying:

“In times of congestion, an unmanaged network is not a neutral network,” he said. “Inequalities in application design and user behaviour mean that an unmanaged network inherently favours certain applications and their users.”

Actually…an “unmanaged” network *is* a neutral network.  That’s pretty much the defninition, if by unmanaged you mean the ISP is not allowed to tamper with or discriminate among the content flowing across their lines.  A neutral network is a highway with no toll roads, no right to pull you over to see if you have pornography or the Little Red Book in your backpack in the passenger seat, and no ability to say that Hondas get a fast lane but Fords have to take the slow lane.

I don’t get how this guy can say net neutrality doesn’t exist.  However, if it works for him, I’m going to start declaring things I find either personally distasteful or bad for my wallet nonexistant.  Like…paying rent.  Rent payments definitely do not exist, you know.  They are but flights of fancy which we should no longer indulge. Also torture —  It doesn’t exist anymore.  And those people who say “liberry” and “I could care less” — totally fictional, you know.

Figments of the imagination.

Unicorns.

Canadian DTCA Charter Challenge Indefinitely Adjourned…and a tree falls in the forest

The News

In the middle of financial turbulence, potential bankruptcy, and a storm of management changes, CanWest Global has decided to seek indefinite adjournment of their court case challenging Canadian restrictions on direct-to-consumer advertising (DTCA) of prescription drugs.  In summary, CanWest was alleging that the ban on certain types of DTCA was infringing on their freedom of expression, especially since they couldn’t make money off that type of ad while media across the border in the US could. The case was seen as a landmark case as it was a challenge to existing law under the Canadian Charter of Rights and Freedoms (a constitutional law case, for non-Canadians reading this), and thus would set new Canadian constitutional precedent.

The adjournment request came right at the 11^th hour, since closing arguments were set to be heard June 15-19, which is to say, this past week. While CanWest can request to revive the case, it seems unlikely at this point, when the company is facing billions in debt and is working to secure major restructuring deals. It appears that CanWest may silently agree with opposing lawyer Stuart Shrybman, that “the company should have pulled the plug on this “ill-conceived litigation” months ago,” and that the best option at this point is to avoid pouring more money into what is pretty much a lost cause.

So what? In short, this case has cost both CanWest and the government a lot of money since it was filed in December 2005. Current regulations on DTCA in Canada are not well enforced to begin with, and to my knowledge there’s not much indication that this is changing. However, by not opening the floodgates wider, we may be able to avoid even more expense and needless adverse side effects (such as Vioxx related deaths) that appear to be encouraged by DTCA.

Didn’t hear about this?  I’m not surprised. Somehow nobody else has either.

The News (not)  in the News

This story has been weirdly absent from the media.  And by media, I mean practically everybody.  When I heard about CanWest dropping this case, I immediately ran to my web browser and started searching for early news coverage…nothing.   A week later…still nothing in the mainstream news sources.

The medical journals? One article in the faithful CMAJ, which has offered ongoing coverage of this trial and whose parent organization, the Canadian Medical Assoiaition, has an official position statement opposing “Brand-specific direct-to-consumer advertisements, such as those permitted in the United States.”

Okay, well, I figured that perhaps this was an example of the failures of traditional media.  Maybe media companies aren’t nimble enough to catch this story in a timely manner; maybe the industry carries an inherent bias against reporting on what is essentially a failure (of the cut-your-losses type) of a fellow media behemoth.

The bloggers, though – the bloggers will have lots to say about this, right?  The bloggers are the new media, right?  Citizen journalism! Media democracy! They are us! We are on the ground, everywhere, reporting on the real issues in our spare time, without budgets to support travel expenses or copyediting, and hoping our cameras are not confiscated by the police and our tweets are not blocked.

So far I have found one lonely blog post about this, from the magazine marketing industry, which I’m sure has been watching CanWest’s case avidly, as a CanWest win would potentially open up a whole new world of direct-to-consumer drug ads, with accompanying revenue stream, for magazines as well as television channels. That post did link to one other blog, from a magazine marketing magazine.

But basically, this adjournment has been a tree falling in the forest.  Why?  Is it just tough to compete in the health news arena the week the WHO declares a pandemic? Perhaps, but the possibility of federal regulations on trans-fats  is getting press. Do we feel bad for CanWest, and not want to slag them more? I dunno, we seem to have an appetite for the details of the restructuring /fall of the Asper family empire. Is DTCA just a boring topic? Well, discussions of the topic can certainly be acronym-heavy, but there has been plenty of coverage in the media (even in CanWest outlets) about the recent Plos ONE article, “Twelve Years’ Experience with Direct-to-Consumer Advertising of Prescription Drugs in Canada: A Cautionary Tale.”

What’s the deal?  I don’t get it.

My government went to court against the largest media entity in the country, basically won, and no one is in the forest to hear the media giant fall!

For previous posts on direct-to-consumer advertising, see: dtca part 1, and part 2.

Disclosure: I work with authors in the PloS ONE article cited above, including on DTCA-related topics.

ETA – Apparently I (and Google) missed The Tyee’s Hook blog coverage of this on June 12. It’s here, if you’re interested.  Of note in this article is the statement, “a spokesperson for Canwest says the company did not ask for the adjournment and plans to continue the case in the fall” — which is entirely possible but not something I have seen/read elswehere. Anyone reading this have more info on CanWest’s official stance on this?

The Olympic Games & Information Issues (for those who don’t live here)

Most people who live in British Columbia are well aware of the multitudinous controversies surrounding the 2010 Winter Olympic Games, which will take place in Greater Vancouver & Whistler next February. However, when I talk to friends and family from other places, I am reminded what a bubble I live in.  Most people are not hearing about Olympics-related issues on a daily basis, particularly not the information policy related issues. Therefore, I thought I’d just give a little sampler of some of the oft-ridiculous but all-too-serious issues related to privacy, freedom of speech, and access to information issues arising from these games, and the doings of VANOC, the Vancouver Organizing Committee for the 2010 Olympic and Paralympic Winter Game.

Free Expression:

Trademarking

VANOC trademarked not only part of the Canadian national anthem (don’t worry, they say they will still let us sing the anthem before hockey games without a lawsuit :eyeroll:), but also common words that one would think un-trademark-able such as “winter,” “Gold” and “Silver,” thanks to a bill (C 47) pushed through the House of Commons last year, which makes using several such phrases a violation of the law.

VANOC has gone so fas as to take legal action against the pre-existing small local businesses Olympic Pizza and Olympic First-Aid Services.  (Good thing the Olympics aren’t being held south of the border; they might sue the Olympic Peninsula for infringement!)

Curtailing artistic and expressive speech in other ways

The Vancouver city council’s recently passed charter amendment (currently awaiting provincial approval) that, among other things, states that “the city may remove illegal signs from real property with limited notice, and may charge the owner for the cost of such removal.”  Illegal here being about Olympic trademark infringement, of course.  Naturally, artists who create social commentary works are up in arms about this.

Privacy:

We’re now aware that there will be  an unknown (to the public) number of security cameras that will be going up (but possibly not coming down?) by the Olympics, and the Giuliani-style police crackdown on our most vulnerable community members has begun.

One local community centre rescinded its offer to be an Olympic venue, citing privacy concerns for the local community. (Coincidentally, this centre’s bid for facility upgrade funds in the new capital budget was denied, while the neighbouring community centre that allowed VANOC to commandeer their facility had its request fulfilled.) However, this local area remains marked on the official security map, and we can only wait and see what that means.

A new wave of transit ads recently went up around the region, encouraging regular folk to report suspicious behaviour to the authorities. Look here for an example of this “Report the suspicious, not the strange” campaign. The image linked to, in case you can’t get it, is a poster encouraging you to “Call a paranormal investigator” if you see a transparent person taking a picture of a security camera in a public place in an airport, but “Call us” (the transit police) if an actual person is carrying out that same, perfectly legal activity of photographing an object in a public place. Here is a link to a transit representative’s explanation and defense of said ad campaign, with pictures of the other, less offensive, ads.

There’s going to be a conference in the fall of 2009 on “The Surveillance Games” that should prove quite provocative and fascinating to any interested in this type of privacy issues, btw.

Access to Information/FOI

It was identified by the in a “Threat Assessment” as early as 2007 that the “Access to Information and Privacy (A-TIP) can adversely affect the security of the Games…” (PDF here, heavily redacted after being subject of a FOI request by the Vancouver Sun). And VANOC seems to be taking that threat seriously.

Although they spend the public’s money (how much? we don’t know yet…), VANOC is not subject to the BC Freedom of Information Act.  Until early 2008, VANOC did, however, forward its meeting minutes to the Monistry of Economic Development, where they would then be subject to FOI requests.  This stopped abruptly and without explanation when VANOC apparently stopped taking minutes.  Interestingly, the ministry lost track of all back minutes they had received at the same time.

Not that the heavily redacted and sparse-to-begin-with minutes were a huge venue for public awareness, and input, but they were something. The fact that they contained as little information as they did and were still deemed too much to make public is impressive. When the smoke clears, likely in about 2012, one wonders what, if anything, will be left in the hands of the province to account for the billions in public funding that went into these Games.

Just for giggles

This isn’t strictly information related, but it certainly is social justice-y, so I thought I’d throw in a link here to the “2010 Inclusive Winter Games Commitment Statement.” (pdf here) Why?  Because it includes such a gems as:

• “Make affordable tickets available for Vancouver’s low-income inner-city residents, including at risk youth and children”
• “Develop opportunities for existing and emerging local inner-city businesses and artisans to promote their goods and services”
• “Provide for lawful, democratic protest that is protected by the Canadian Charter of Rights and Freedoms”
• “Ensure people are not made homeless as a result of the Winter Games”

Do you think the people who write those things believe in them, and just get disillusioned afterward, or is it tongue-in-cheek from the beginning?

-Greyson

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 ailments – particularly 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

Brand Sponsorship of YA Novels?

As a major YA novel fan, this made me want to cry.

A NYT article this week discusses what happened with the innovative and bestselling “Cathy’s Book” and what is in the plans for a new tween series, “Mackenzie Blue.”

After Running Press/Perseus Books, publishers of Cathy’s Book, revealed that they had agreed to have the characters wear particular brands/lines of makeup in the novel, they experienced a big backlash from public advocacy groups and authors alike. The Press has issued a revised paperback edition with the specific product references removed.

The Cathy’s Book fiasco would feel like a victory if there weren’t other attempts – such as Mackenzie Blue – waiting in the wings. Harper Collins has hired not an author, but a marketing executive to write these books. A marketing exec who specializes, of course, in marketing to teens and pre-teens. *shudder* The NYT article quotes this woman explaining how the partnerships will work:

Ms. Wells said she would not change a brand that she felt was at the core of a particular character’s identity merely to cement a marketing partnership. “Mackenzie loves Converse,” she said, referring to the series’s heroine and the popular sneaker brand she favors. “Does Converse want to work with us? I have no clue. But that doesn’t negate the fact that Mackenzie loves Converse.”

However, when asked what she would do if another sneaker company like Nike (one of her clients) wanted to sponsor the books, she said, “Maybe another character could become a Nike girl.”

Oh, well, that’s a relief! For a moment there I was worried that corporate sponsorships might influence content! (<–sarcasm) (…also, does it skeev you out too to hear the phrase “a brand…at the core of a particular character’s identity”? I’m all for realism in teen books, and I understand that some young – or old – people identify strongly with a particular brand, but seriously now, a brand should not be at the core of every character. That is not realism; that is advertising.)

As a a librarian, parent and book reviewer, I have many concerns about product placement in books for youth. Will authors eventually be expected to write in specified products to their stories, in order to get a publishing contract with a major press? How will we know about these sponsorship deals? Presumably all publishers won’t be (haven’t been?) as forthcoming about their “sponsorship” agreements as Running Press.

And what can we do to send a strong message back to publishers that we do NOT approve of such meddling in our YA literature?

When I teach college courses in Women’s/Gender Studies, I always sneak in media literacy stuff. Learning how to read and question health reporting, the sad state of our media “democracy” these days, what is “net neutrality,” etc. Invariably, many students are shocked and appalled after reading an article about product placement in TV shows. What does this say to me? Educated, bright, young Canadians – even those who choose to take elective courses that focus on critical thinking – have no idea about all the marketing that surrounds us.

Like many librarians I am a bit of a bibliophile.  Books are sacred things, and somehow the idea of novels becoming as corrupt and marketing to our youth as much as television upsets me. Can we do something about this? Exclude books from the running for awards if they have paid product placement or some such, perhaps?

And what of book buying for libraries? When the “select for literary quality” philosophy bumps up against the “give them what they want” ideology for collection development, does product placement in books ever cause them to be removed from a list? Should school libraries, who do have some responsibility to act “in loco parentis” eschew sponsored books? Is this different from commercial popular books like those modeled on TV shows, toys, etc.? (It feels different, somehow, because it’s more sneaky.)

Other than the makeup fiasco, Cathy’s Book sounds like an interesting concept…but should I not read it on a moral stance? Fortunately, I checked my local library catalogue and it appears that they have bought the revised, paperback edition. But what if the publisher was brash enough to refuse to offer a non-commercial edition?

Off to tear my hair out now…right after I put a hold request on Cathy’s Book.

-Greyson