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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

Connect with me on the following networks:
FaceBook, Twitter, LinkedIn

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Postpartum Depression Online Communities

I just had my 2nd baby boy.  He’s beautiful, healthy, and seems to be always hungry.  His big brother, who is a bit over 2 1/2 years old, is happy, so far, with the new addition to our family.

With this exciting event in my life, I thought it might be an opportune time to focus on an important topic for new Moms;  online support groups for new Moms with postpartum depression (PPD).  Most of the online networks that I have found are simple community discussion forums, therefore I will not go in depth on any of them.

Some statistics to get us started:

  • According to the Centre for Addiction and Mental Health (CAMH), 10-15% of women experience PPD, often detected within 2-6 weeks after the birth of their child.
  • CAMH goes on to state that PPD is the most common complication of child-bearing.
  • 2/3 of women polled by the Mommy network MomsLikeMe.com (poll date: March 1 2010) believe that PPD is underdiagnosed.

MomsLikeMe.com , March 1 2010

Some online support groups for women suffering from PPD, as well as their friends and families:

  • Our Sisters’ Place (OSP), based in Toronto, is “a program of the Mood Disorders Association of Ontario that provides support to women who are dealing with problems related both to mood and to hormonal changes, throughout the life cycle. This includes feelings like depression, anxiety, and psychosis, and events like puberty, pregnancy, post-pregnancy, menopause, and post menopause.”  As part of their website, OSP hosts an online forum for discussions regarding PPD.  As part of my research on the topic, I discovered that the Canadian Mental Health Association, Sudbury / Manitoulin branch links out to this online community.  Perhaps other branches do as well, but this is the only one that came up as part of my search.
  • The Postpartum Stress Center, based in Pennsylvania, “specializes in the diagnosis and treatment of prenatal and postpartum depression and anxiety disorders.”  As part of their services, they also host an online community for support.  Partners and family members are encouraged to participate in the online discussions as well.
  • The Online PPD Support Group, based in the U.S., focuses solely on PPD.  They also host online discussion forums for PPD patients.  When you click on the “Peer support e-mail list”, you get sent to a Yahoo! Health Group which faciliates online support for PPD.

Since many Canadians use FaceBook, I found a few pages/groups that might be worth investigating.  Considering the medium to high level of activity on the other forums that I have looked at, I was surprised to see that there are few fans / members of PPD FaceBook pages and groups. I am assuming that this might be due to a lack of promotion of the pages / groups, or perhaps that the women suffering from PPD are either not highly involved with FaceBook, or that they might be concerned about their privacy. If you have other insights, feel free to write a comment.

  • The Postpartum Depression Awareness is a group that requires membership approval.  I’m still on the waiting list, so I have not been able to check out the content as of yet.  Same for the Postpartum Support International group.
  • As I was double-checking my links, I noticed that the links to the two groups mentioned above go to the FaceBook sign in page. This might be because the groups are by approval only. If you are interested in these groups, you might want to just do a search for them when you are in FaceBook. Sorry for the inconvenience.

There are plenty of other online sources of help for mothers and family who need support for their PPD.  Many of these sites are related to general health, or even parenting / Mom topics, yet they allow the opportunity to delve into PPD as a discussion.

  • Two examples of general medical sites providing online support for PPD patients include the Mayo Clinic and HealthBoards.  The Mayo Clinic’s website hosts a variety of resources to help women with PPD, including a Mayo Clinic blog on depression written by a psychiatrist, with some of the topics focusing on PPD.  The HealthBoards Message Boards site which covers a wide range of topics, including PPD.
  • Two examples of general parenting online communities hosting a forum focused on PPD include iVillage and What To Expect.

The Mayo Clinic offers advice on how to select the appropriate support group, both ‘live’ and online.  They also offer some wise advice regarding the use of online health support groups;

  • “Keep in mind some people prey on vulnerable individuals they meet online.”
  • “Be aware of the possibility people may not be who they say they are, or may be trying to market a product or treatment.”
  • “Be careful about revealing personal information, such as your full name, address or phone number, to strangers online.”
  • “Make sure you don’t let extensive Internet use lead to isolation from your in-person social network.”

There are many websites providing information on PPD, and a variety of online support opportunities.  If you or somebody you know suffers from PPD, seek professional help immediately from a healthcare professional. Online support groups might provide some comfort in knowing that you are not alone, as well as an opportunity to share your experiences and hear about others’ experiences with the disease and their traetment, but they are not meant to replace the expertise of your physician, pharmacist, or other trusted healthcare professionals.

Stay in touch,
Natalie

Connect with me on the following networks:
FaceBook, Twitter, LinkedIn

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