Have You Met Turbo & Scott? FTC May Want to Meet this eBook for Children Sponsored by Novartis

Have You Met Turbo & Scott? FTC May Want to Meet this eBook for Children Sponsored by Novartis

I just found this tweet from @Novartis:

"US only: Have you met Turbo & Scott? Visit http://t.co/yJDtSvhQ to read the TSC eBook or download Barks and Crafts"

At first, I thought this would be some kind of Rx branded Web site because it was for "US only," which usually means there's some direct-to-consumer (DTC) Rx product information on the site or closely linked to it. But there isn't any hint of a drug mentioned anywhere that I can find.

It's really a site designed for young children who have TSC, "which stands for three big and hard-to-pronounce words, Tuberous Sclerosis Complex."

NOTE: Novartis probably markets the only drug approved by the FDA for treatment of TSC (see press release). Hence, even though the drug is not referenced on this site, FDA may regulate the site as if it were marketing that drug. European regulators also may feel that the TSC site violates their regulations regarding DTC communications.

The eBook is beautifully illustrated and written in the simple language that a child would use. In fact, it's a story told by Turbo, the stuffed dog friend of Scott who is "a real boy and [Turbo's] best friend." Scott has TSC.

I've never heard of TSC before, but apparently, it is a pretty serious hereditary condition that can cause seizures and may require Scott and other kids with TSC to be examined and treated by as many as SEVEN different specialists: Neurologist, Ophthalmologist, Pulmonologist, Nephrologists, Psychiatrist, Cardiologist, and Dermatologist. That's a lot of "gists!" The ebook does a good job explaining to kids what these doctors do.

But what the site does NOT do well (IMHO) is comply with the U.S. Children's Online Privacy Protection Act (COPPA). COPPA "applies to operators of commercial websites and online services directed to children under 13 that collect, use, or disclose personal information from children." Such sites may not collect personally-identifiable information from children without the consent of parents (see COPPA FAQs).

The URL in the tweet above resolves to this URL: http://www.tuberous-sclerosis.com/patient/ebook/ebookhome.jsp which displays this page:

There is a notice from Novartis at the bottom of the screen, which states "Use of this website is governed by the Terms of Use and Privacy Statement. Copyright ©2012 Novartis Pharmaceuticals Corporation. All rights reserved."

The privacy statement clearly states that "Novartis will not knowingly collect, use or disclose personally identifiable information from a minor under the age of 13, without obtaining prior consent from a person with parental responsibility (parent or guardian)." However, any child (including me) can click on the "Send to Friend" tab and enter his/her name and email address as well as the email address of a friend:

Novartis says "The email addresses you furnish will be used solely to notify the recipient of the link to this page and that you have requested it to be sent. The addresses will not be retained or reused." Since the information is not "retained of reused," this "Send to Friend" feature may be eligible for the "one-time exclusion" allowed by COPPA.

However, another feature of the site allows children to send an email message directly to TSC.Story@novartis.com.

On that page Novartis says: "TSC.Story@novartis.com is to be used to show your interest in further information. We look forward to receiving your email. The personal email information you submit will be used to deliver information about TSC and the TSC eBook program only. By submitting your information you agree to receive information via emails. Please be assured that although we share your information with third parties who work for us on these activities, neither Novartis nor third parties working on our behalf will sell or rent your personal email information. You may unsubscribe at any time by clicking here and specifying Unsubscribe in the subject of the email."

This is clearly an attempt to collect personal information from the children at whom this site is aimed.

I've sent an email to TSC.Story@novartis.com requesting more information about TSC. I signed it "Johnny Mack." So far, I haven't received any response.

P.S. There's a bit of confusion about who is responsible for collecting personal information on the site. I found this statement: "The TSC eBook is sponsored by Novartis Pharmaceuticals Corporation. With the exception of www.TSCStory.com and www.FacingTSC.com, the websites mentioned in this eBook are independently operated and not managed by Novartis, which assumes no responsibility for any information they may provide."

BI's Facebook Game Syrum to be Launched "When It's Ready." Needs to Obey Privacy & FTC Laws First!

BI's Facebook Game Syrum to be Launched "When It's Ready." Needs to Obey Privacy & FTC Laws First!

I wrote a review of Boehringer Ingelheim's (BI's) long-awaited -- but not yet available -- Facebook game, Syrum, in yesterday's post to Pharma Marketing Blog (see "Pharma & Fun, Not Oxymoronic? Here Comes Gamification!"). Today, I brought up the topic of pharma-sponsored "gamification" during the #hcsmeu chat. BI's John Pugh -- who is in charge of the Syrum project -- saw the "bat signal" that was raised when the subject of Syrum came up and he joined the conversation.

One question I asked during the chat was "@JohnPugh When is Syrum actually going to be launched? Hope not same schedule as FDA guidelines! :-)" to which John responded: "@pharmaguy Syrum will be launched when its ready, but I expect the first round of testing to be B4 the end of this year."

Oh, Oh! This sounds suspiciously like FDA's "promise" to come up with social media guidelines by the "end of the year" (ie, 2010).

So the timeline for the ACTUAL release of Syrum is sometime in 2012 (after 1st round of testing) -- maybe even ONE WHOLE YEAR after the game was announced on Facebook! Related to that, I posted this comment to the #hcsmeu chat: "Personally, I'm a little miffed at BI for promoting Syrum so far in advance of its actual launch date! All hype, no substance!"

How can BI justify announcing Syrum on Facebook (and at several industry conference presentations) a year or more before the game is actually available to be played? Hint: note the signup section at the bottom of the screen:

Of course, I signed up. I'm not sure how many other people also signed up, but is this BI's way of trial ballooning the concept? I mean, will the game be developed only if a certain number of people sign up?

John Pugh suggested that people who wish to beta test the game (me! me! pick me!) should use this form to sign up. I pointed out that the sign up form seems only for people who want to be notified when the game is launched ("Sign up below to be the first to know about the official launch or come back soon... the health of the world depends on it!").

After signing up, I received the following email message in my SPAM filter/box:

A "Syrum - Out of Office" message? Very odd! What's BI trying to do here? They are certainly not opening up to communicate with potential game players. I have NEVER received an "out-of-office" email from a pharma company! It shouts to me "We don't care very much about you." A pharma company should NEVER send an "out-of-office" reply! First of all such messages may end up ignored or, as in my case, get caught up in spam filters and never seen!

BI Ignores My Privacy Concerns and May Violate COPPA
Another point I made to John Pugh was that the Syrum site does not include a privacy policy or even a privacy statement! The "out-of-office" email message also does not include a link to a privacy statement, although there IS a link to an unsubscribe function/form.

The Syrum site also may violate US and other laws regarding Web sites that may be intended for or used by children under the age of 13 (eg, The Children's Online Privacy Protection Act (COPPA)). These laws do NOT allow collection of personally-identifiable information from children without the consent of parents. Since Syrum is a game site that John Pugh says is intended for "everyone," then it is also intended for kids.

I hope that BI will fix these problems as soon as it reads this post. Consider this my first beta test report!

Update (31 Oct 2011): I am happy to report that BI -- after reading this blog post -- has added this notice to the bottom of the Syrum Game promo screen: "Data collected form this web page will not be passed on to third parties. It will not be used for any other purpose than to contact you regarding your request or comment. All data will be deleted upon your request or as soon as they are no longer needed in order to contact you regarding your request or comment."

However, there is still the issue of collecting personally-identifiable information from children. BI needs, at least, to add a statement such as "This site is not intended for use by children under the age of 13."