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MS Online Community Closed due to Canadian Regulations

According to the MS Society, an estimated 55,000 – 75,000 Canadians have Multiple Sclerosis (MS). Some of these MS patients may feel a bit lonely these days when online, as the popular MS online forum MSWatch.ca by Teva Canada Innovation closed on October 15 2010.

On Friday October 15th, just a bit before lunchtime, I received an e-mail from an MSWatch.ca e-mail address with the title “The MSWatch Website is Changing“.  I was eager to read the e-mail because I assumed there would be some exciting features added to the site.  To the contrary, it was an announcement that the MS online community forum within the website would be removed effective October 15 2010.

The e-mail read as follows.  Note that I took the liberty to bold portions of the statement that I felt were relevant to this post.  There were no bolded or highlighted statements in the original document:

The MS Watch Website is Changing

Dear MS Watch member,

We have, since 2002, grown and changed with the multiple sclerosis community, who learn, share and cheer each other on every day. We’ve changed the look and feel of MSWatch.ca, we’ve added resources regularly and we’ve adapted when you reached out to tell us what you want from the website. It’s been a delightful and inspiring journey, one that we hope to keep going for years to come.

Part of that growth and change has included the MS Watch forum, where community members exchange ideas, information and personal messages. It is with deep regret that we must announce that on October 15th 2010, the MS Watch forum will be closed. This was an extremely difficult decision to make, with personal implications for everyone who has read or shared their thoughts and feelings in a forum post.

Because the forum grew over time into a popular place to discuss Multiple Sclerosis, patients naturally gathered together to discuss their individual treatments which included both the good and bad that may have impacted themselves and their MS. Unfortunately, for any pharmaceutical company sponsored website, the company is responsible to ensure that the content conforms to the requirements of the Food and Drugs Act and Regulations. Teva Canada Innovation is responsible for all content that might be on the site regardless of whether it is mentioned in a community forum. We believe that your discussion of your therapy is an integral part of your discussion of the issues you face with MS. As a result, we felt that it would be inappropriate for us to monitor, edit and/or remove any posts that could be misleading or promotional about any individual therapy.

This has left us with the difficult decision to close the forum element of the website as of October 15th. This is not a decision that Teva Canada Innovation takes lightly. We know how much the forum conversations mean to everyone in the MS Community – us included – and it is difficult for us to make this announcement. When you come back on October 18th, you’ll still be able to log in as always and see all of the great content of the site, but the Community Forum will no longer be there.

The connections all of you have made with each other and the support you consistently offer are truly inspiring. We encourage you to take that spirit of camaraderie and extend it to other spaces for the MS community. We are now and will remain available to community members by email at info@mswatch.ca or by phone to Shared Solutions at 1-800-283-0034.

It is our privilege to play a role in this very special community. Our sincerest thanks go to the members who were always posting, following up and keeping the conversation going. It’s our hope that you’ll continue to consider MS Watch a valuable destination for MS information.

Sincerely,
The whole team at MSWatch.ca

So what was the issue with the site? It was a regulatory issue.  Since the MSWatch.ca community was non-gated, anybody could become a member quite easily.  As a result Health Canada views the site as open to the public.  Forum postings by the members were not restricted to product name, quantity and price.  In Canada, direct-to-consumer (DTC) advertising of Schedule F prescription products is highly restricted in that only the name, price and quantity can be discussed.

The content included in the site by Teva Canada Innovation themselves appeared to be within the regulatory guidelines.  The problem was that the members were discussing various MS treatments in the community forums beyond what is allowed by Health Canada (name, price, quantity).  According to the “Social Media Marketing in Pharma: What Works in Canada” conference, a pharmaceutical company is responsible for all content within their site, regardless of who posted it.  So when MS patients were sharing information with each other about their treatments on the MSWatch.ca forums, Teva Canada Innovation held full liability for this content.

The following pics demonstrate how the online forums were promoted on the site, and what they looked like as well:

Here are some of the most notable changes within the website as of October 18th 2010:

Could the MSWatch.ca forums have been modified in order to comply with the Canadia regulatory guidelines (DTC)? Teva Canada Innovation could have allowed members to continue to use the forum if the company would have taken the responsibility to edit or remove content that fell outside of the Canadian guidelines.  As MSWatch.ca is a very popular site (10,490 members as of October 15 2010), and the forums were very active, monitoring, editing and removing content would have resulted in a substantial effort o behalf of the company.  Moreover, it would have completely changed the context of some discussions, and some of the site members might have been upset about this.

How does this compare with the American versio, MSWatch.com? MSWatch.com, does not host an online community.  Rather, they link to the U.S. National Multiple Sclerosis Society’s online forums.  This gives them much greater flexibility.

Does the Canadian MS Society hosts its own online communities? Yes.  In fact, they host four separate online forums.  The first three are aimed at various members of the family: MSforKids.com, MSforTeens.com, and MSforParents.com .  All of these forums were launched in 2004.  In 2006, a fourth forum focused on general discussions was launched; MSDiscuss.com .

Is there an opportunity for an organization like Teva Canada Innovation to sponsor the MS Society’s online forums? Unfortunately not.  At the moment, the MS Society is not open to this type of partnership.  On October 19th, I spoke with Darrel Hominuk, Director of Client Services of the MS Society, and openly asked him if the MS Society would consider accepting an at-arm’s-length sponsorship of their online forums by a pharmaceutical company.  He mentioned that the society would like to maintain their independence at the moment.

But at least this is an alternative option for MS patients and their families to participate online with a group of like-minded individuals all sharing experiences and concerns of living with MS.

In conclusion, Teva Canada Innovation was a leader within the pharma industry by adopting social media principles and giving members free range to talk about anything that they wanted to talk about.  This is ideal and would be acceptable in many other industries, but unfortunately not in the Canadian pharmaceutical industry.  We have guidelines set by Health Canada that we need to abide to, whether we like these guidelines or not.  If following the guidelines means that your tactic no longer meets your strategic objective, then maybe it is best to put that tactic aside and try something different, something that does work within our guidelines.  I wish our DTC rules were much more relaxed, but at the moment, they are rigid.  Perhaps a debate to hold for a future post.

Note that I am not an expert in Canadian regulatory issues.  I am merely providing my opinion based on the guidelines as I understand them.

I hope this real Canadian healthcare social media case study is helpful.  Tell me what you think by leaving a comment.

Stay in touch,
Natalie

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10 Responses

  1. […] This post was mentioned on Twitter by 41 Minds and Rob Harrison, Nat Bourre. Nat Bourre said: MS Online Community Closed due to Canadian Regulations (real Canadian pharma case study) http://bit.ly/cSYa3X […]

  2. Nat
    Your headline appears to be false. It is possible to do what TEVA set out to do and follow the regulations. PAAB can help you understand the regulations. Therefore, there must be another reason why TEVA cancelled it.

    Ray

    • Thanks Ray. Glad we chatted this morning, and I appreciate you sharing my article with all the PAAB approvers. I think we were both in agreement overall. The guidelines do not prohibit a social media online forum by a pharma company, but their restrictive nature can result in a company deciding that the tactic is no longer within their strategic objectives. You’ll notice that I address this twice in the article: 1) under the segment “Could the MSWatch.ca forums have been modified in order to comply with the Canadia regulatory guidelines (DTC)?” and 2) in my conclusion statement: “If following the guidelines means that your tactic no longer meets your strategic objective, then maybe it is best to put that tactic aside and try something different, something that does work within our guidelines.” I hope that clarifies the issue.

  3. Natalie,
    Thanks for this article. I think your proposal to Darrel Hominuk, Director of Client Services of the MS Society was spot on. Approaching this independent group and having them host such a forum makes perfect sense. Moreover, your question of accepting pharma funding implied that group would still retain its independence (“arm’s length relationship”), so I can’t figure out the resistance. With full disclosure by the group as to any prospective funding received, and assuming this sum would be within acceptable parameters (not more than 10% of its overall funding), then the perfect accomodation would be struck. I hope this forum finds a new home—its value is clear by its current popularity.

    • Thanks Carmen. I was a little surprised as well by the MS Society’s response, but they must have a good reason for this. In February 2010, I spoke to the MS Society about their forums as part of research for an article that I was going to write (but never ended up writing about it due to lack of time). Their forums (4 in total) each had between 500 and 1,000 members. The MSWatch.ca site had over 10,000 members. That’s a lot of patients and family members who could have benefited from the MS Society forums. But then again, I only contacted the MS Society. I don’t now if Teva would have even been interested in considering this. The reason I contacted the MS Society was because I was expecting a ‘yes’ response. Had they said ‘yes’, then I would have been so happy to put that teaser out there and see if a company would have sponsored them. Just my way of volunteering for non-profits – I try to help promote them and connect them with the right folks with my online work.

  4. Hi Nat,

    Thanks for sharing such useful information. Closure of this sight will clearly be a great loss for Canadian MS patients. I am concerned about your blog title being misleading and corroborating a key reason fuelling the reluctance of Canadian pharma to embark into the unknown social media territory. There are creative ways to “play” in the social media playing field in ways that are respectful of regulations. Clearly, as Ray pointed out, there are other reasons underscoring cancellation of the site. Contrary to Teva’s position, that is it “inappropriate for us to monitor, edit and/or remove any posts that could be misleading or promotional,” it is perfectly “appropriate” (and pharmacovigilant) to provide a professionally moderated forum for participants that does not distort the “culture” of the community.

    Kim

    • Thanks Kim. Point taken, but the title was not meant to be misleading at all. I was merely referring to the fact that the regulations had a key role to play in their decision to remove the forums. If it weren’t for the restrictive DTC guidelines, the end result may have been quite different.

  5. Hi Natalie – thanks for reporting on this important event in the evolution of Healthcare Social Media in Canada. Overall, I think it is unfortunate for the MSWatch members that their discussion forum was closed. There are very effective approaches to developing community publishing policies that do a good job balancing the needs of members to openly speak their minds and the need for regulatory compliance. Furthermore, there are excellent 3rd party moderation service providers that can help build moderation protocols (and specific “escalation” protocols for adverse event reporting) that are very effective, allow for the sponsor to maintain regulatory compliance and allow for continued dialog. I really hope that Teva is open to examining these approaches in hopes that they can re-open these forums!

    • Hi Greg. Totally agree with you. I guess it all depends on whether they can still implement the forums and maintain their strategic objectives. Who knows what influenced their decision behind closed doors.

  6. […] Rx-DTC guidelines Posted on November 24, 2010 by marketing4health Last month, I posted an article about the removal of the MSWatch.ca online forums. Many people around the world responded to me stating that they felt it was the MS patients who had […]

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