Tag Archives: consumer health information

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:

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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 11th 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?

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Chief Public Health Officer offers CHN postmortem

Okay, who has seen this? (Non-OA)

Butler-Jones D. (2008). Streamlining How We Deliver Public Health Information Online: From CHN to PHAC. The Serials Librarian, 55 (4): 625-627. DOI: 10.1080/03615260802282559

It came to me via the CANMEDLIB listserv, so I’m sure some of you who have access to to journal have also linked into it and taken a peek.

In the article, Dr. David Butler-Jones, first (and thus far only) Chief Public Health Officer of Canada, assures librarians that the closing of the Canadian Health Network (CHN) is not a loss, but

“rather, a change that consolidates resources and information into one website, that of the Public Health Agency of Canada.”

According to Butler-Jones, the primary reason for termination of the CHN was that

“The decision was made to incorporate some CHN materials into the Public Health Agency’s website to better reach both that professional audience [“teachers, health care providers, public health professionals and more”] as well as the general public.” (emphasis mine)

This, naturally, brings up the question of usage stats.  My understanding is that 40% of the CHN users were health professionals, although I’m not sure who all that includes and who the other 60% were. Is it teachers who were not using the CHN, but rather the PHAC?  The general public?  Some specific groups of health care providers?

I’d love to know who the users of PHAC are and who they were a year ago as well. It’s unclear from the Serials Librarian article which audience is considered to have been affiliated with which site, and whether those groups/individuals formerly using the CHN are thought to have actually migrated their use to the PHAC now. (I know I’m sure not; I have become reliant on the NLM’s MedlinePlus for most searches that would previously have been done first on the CHN. You?)

The secondary reason was that the PHAC website is “better equipped” than the CHN to take advantage of today’s online information searches, which use “advanced search engines.”

What do you think this one means?  Does PHAC have better metadata on its webpages than the CHN did? (The PHAC webpages I checked out do have rather sexy metadata, I must say.)  Are the webpages more accessible? More bandwidth to handle higher hit counts? A deal with Google to up pagerank? I’d love to know what this means, personally, so I can think about whether I think it’s a good reason to scrap rather than reform a website.

A third reason Butler-Jones lists as “[a]nother reality at play” was the necessity of making cuts to departmental budgets within government.

Ah, well, this is the one that has been discussed from the beginning.  In fact, this is the only reason we were getting back when things were actually going down. I still have not heard any official answer as to where the funds to launch the new (and relatively vapid) Healthy Canadians website came from, right when the CHN was being axed…have you?

We know the search mechanisms/indexing on the PHAC, Healthy Canadians, and Health Canada websites are inferior to that on the old CHN for consumer health research, and this is likely to be especially so for certain “hot” (controversial) topics. (Go ahead – try it!  And do let me know what you searched for and how the search went on the various sites.) We don’t know whether there is any interest in this matter on the part of the government, or any planning to address this on the PHAC site.

I am curious to know how much of the CHN content has now or will eventually be rolled into the PHAC website.  I know some of it has been appearing, but I believe there is also some that will not migrate. Anyone know more about this transition plan?

Butler-Jones asserts that the CHN and PHAC websites had the same goal and it was financially irresponsible to continue to maintain both sites. He alludes to better systems “in the end” without mentioning when that end will come or what the plan is for getting us there. And he thanks all of those who helped build the CHN, stating that he hopes

“the Public Health Agency of Canada can count of your continued involvement and support.”

Because, um, why wouldn’t health librarians want to pour time and effort into a new website when the one they’d spent the past decade nurturing into a success was just slashed?

As Andre Picard stated last December,

“The [CHN] affiliates don’t need hollow praise, they need cold hard cash to keep the much-needed service up and running.”

And now? Health librarians and information specialists still don’t need hollow praise. They need to be actively and seriously consulted and listened to when national health information infrastructure is being developed. I know sometimes hard questions about resources and budget cuts must be made; however I’m probably not alone in my appreciation of transparency, honesty, and consultation.

Are any of you library/info types out there who use to work on the CHN now working on the PHAC? If so, what are you doing and how is it going?  Is it same thing/different URL, or are there differences in the type of information you are providing now?  What library & information specialists is the PHAC consulting in order to provide accessible information and improve usability? I’m curious!

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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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