The other day a Pharma BNET article described patients upset with sanofi-aventis (SA) who had gone to the company’s Facebook page. I followed the Facebook link to what appeared to be a legit, corporate page. It wasn’t until John Mack at at Pharma Marketing Blog probed a little closer that we learned that it was fake.

This fake SA Facebook page has 3,783 fans and seems to have been live since December 2008. I’m assuming that SA has contacted Facebook and asked them to remove it. In the short term, it’s surprising that an authorized PR rep hasn’t commented on the fact that the page is fake (although one of the patients has recently noted this).  Unfortunately, in the meantime, damage is being done to SA’s reputation. An unhappy patient has posted comments to the page and noted that they were banned and previous comments removed. At cursory glance, people would be given the impression that this has been done by SA.

The Real Deal?
SA also has what appears to be a legitimate Facebook page: with only 366 fans. This page supports SA VOICES efforts to: “Empower employees, retirees, friends, families and communities to educate, engage, and mobilize with our grassroots network as we focus on healthcare industry priorities.”

SA has opened this page up to comments and these unhappy patients have also taken their issue to this public forum.  And SA has not responded to them in this space. I’m hoping that SA PR/Legal are working on a plan to handle this situation. Ideally, they should be communicating with these patients and transparently sharing their efforts. Social media strategies should always include an approach to handle this type of negative feedback.

A brand reputation takes years to establish and can be very quickly damaged online. No one knows that better than Dominos Pizza which dealt with a PR nightmare when two rogue employees posted a video to YouTube doing unmentionable things to their food. This is an extreme case, but an excellent reminder that companies should be closely monitoring the online space, especially what’s going on in social media channels.

This post was contributed by Eileen O’Brien, Director of Search & Innovation for Siren Interactive. You can connect with her on Twitter at @eileenobrien.

(Image courtesy of pinksherbert on Flickr)

Shared stories are an effective way to encourage compliance with therapy, as Pam Todd noted in a recent post. And if the story taps into a national passion, like football, the opportunities for visibility and interest grow.

But not just any story will do. A personal story as part of a campaign to encourage compliance must incorporate three essential ingredients:
•    Acknowledge the difficulty
•    Model the behaviors
•    Demonstrate the benefits

Touchdowns for Diabetes from Eli Lilly does a great job of telling the story of Chicago Bears quarterback Jay Cutler’s management of his recently diagnosed Type I diabetes. The series of short videos, also available on YouTube, successfully addresses each of the three essential components in an adherence campaign.

Acknowledge the difficulty
Encouraging compliance has to start with a realistic recognition of the difficulties. Jay talks about the complexity of testing after every series of a game, of the anxiety about having to give himself shots, of his longing for sweets. It’s real and honest.

Model the behaviors
Showing how adherence can be integrated into daily life is a highly effective way to encourage compliance. There are many clips of Jay testing on the sidelines. It’s clear that everyone (Jay, his teammates, the coaches and staff) understands that testing for Jay is like getting water for others – just part of what has to happen.
[Read more! →]

The National Organization for Rare Disorders (NORD) and Inspire recently surveyed members of their online rare disease community. The data is fascinating, but this jumped out for me: 37% of respondents are not sure if there are FDA-approved treatments for their rare conditions.

This shows the need for pharmaceutical companies to increase awareness of their drugs and provide more education to this target audience. The people surveyed are members of an online community, so they use the Internet. This highlights the opportunity for pharma to use the online space to reach relevant patients and provide treatment information.

The survey provides support for Siren’s insight that rare disorder patients are the primary drivers of diagnosis and treatment: 41% of respondents report that their doctors are not knowledgeable or barely knowledgeable about their disorder.

Online communities improve health
The data also reinforces the idea that online communities can play an important role in the health of people with rare diseases; 58% of respondents say that participation in the rare disease online community has improved their health.

From experience, we know that patients with rare disorders feel alone and isolated; they seek a connection with others like them. It makes sense that finding a supportive community would make a difference in their health.

The survey was taken by 554 members of the online community: 68% are patients and 32% are caregivers while 81% are female and 19% are male. Read the full results at Inspire.

Empowing ePatients
If you are interested in this topic, you may want to attend Engagement for Niche Brands — A New Paradigm for Empowering ePatients at the CBI eMarketing event. The workshop will be led by Dave deBronkart “e-Patient Dave”, Cynthia North, Consumer Marketing Director of Bayer Healthcare Pharmaceuticals and Heather Reilly Powell, Director, Compliance Training and Reporting of Daiichi Sankyo and Wendy White, President & Founder of Siren Interactive.

This post was contributed by Eileen O’Brien, Director of Search & Innovation for Siren Interactive. You can connect with her on Twitter at @eileenobrien.

(Image courtesy of ciadefoto on Flickr)

Here’s the latest example of the increasing popularity of social networking:  Facebook has become the second most popular website in the U.S.  According to Compete, Google is number one and Facebook has bumped Yahoo out of the second spot. In January 2010, Facebook had nearly 134 million unique visitors.

Facebook has not just grown in unique visitors.  Its attention rating has also grown. So the amount of time people are spending on Facebook is growing, compared to the amount of time they’re spending on other online activities.  Last month, 11.6% of all time spent online was spent on Facebook, compared to 4.25% for Yahoo and 4.1% for Google.

Not Just For Teens
Facebook has successfully expanded its audience to older Americans. A study by Pingdom found that 61% of Facebook users are aged 35 or older.

This latest data shows that social media can no longer be considered a fringe activity.  It’s an essential way that people communicate.

This post was contributed by Eileen O’Brien, Director of Search & Innovation for Siren Interactive. You can connect with her on Twitter at @eileenobrien.

A Forbes article came out this week about the most expensive medicines on the market, naming nine drugs that cost more than $200,000 per year.  The author singled out Alexion Pharmaceutical’s Soliris, Shire Pharmaceutical’s Elaprase, and BioMarin Pharmaceutical’s Naglazyme. These are treatments for patients with rare disorders.

Simple Economics
I have several issues with the sensational nature of this piece. First, it’s simple economics: fewer patients means higher drug prices. From the article: “In the inverted world of drug pricing, the fewer patients a drug helps, the more it costs.”  How is this inverted?  Isn’t that how all economics in a capitalist system works?

The bar set by the FDA is not lower, in terms of safety and efficacy, for drugs that address rare diseases. In fact, it’s much harder and sometimes impossible to field a multi-arm clinical trial because there are so few patients and virtually no natural history for many rare disorders.  The Orphan Drug Act offers incentives for companies to have extended monopolies on the orphan drugs they bring to market, and since this act was put in place in 1983 more than 200 orphan drugs have been approved.  Before the Orphan Drug Act there were none.  With our current drug development system, the only chance a patient with a rare disorder has is if a company takes on a risky drug development process through the FDA process designed for bigger market drug trials.
[Read more! →]

Imagine that your health is failing or that your child is very ill, but the doctor can’t figure out what’s wrong. This goes on for a number of years, despite multiple visits to specialists. Then when you do get a diagnosis, you learn that you may never meet anyone else who has this disease or has even heard of it since it affects only a few thousand people. Unfortunately, this describes the experience of many people with rare diseases.

That’s why it’s so important to increase awareness of rare diseases. February 28, 2010 has been designated as worldwide Rare Disease Day to call attention to the public health issues associated with rare disorders. A rare disease is one that affects fewer than 200,000 Americans. Yet, because there are more than 6,000 rare diseases, 1 in 10 people in this country are impacted.

In the U.S., Rare Disease Day is being sponsored by the National Organization for Rare Disorders (NORD). As experts in helping organizations communicate with small patient populations, Siren Interactive is partnering with NORD to promote Rare Disease Day.

Siren designed a website and developed a social media strategy that included Facebook and Twitter to provide access for the rare disease community to the many ways that NORD offers to participate in this movement.

Raise Your Hand
Lundbeck Inc., a pharmaceutical company dedicated to improving the lives of patients affected by complex central nervous system disorders and rare diseases, is supporting Rare Disease Day 2010 by launching the Raise Your Hand to Fight Rare Diseases campaign.

Individuals simply click the Raise Your Hand icon posted to http://rarediseaseday.us, as well as Lundbeck’s home page, and can also access a widget to spread the word through social networking sites. For everyone who clicks the icon during February, Lundbeck will make a donation to a general fund managed by NORD that is used to support rare disease research.

So raise your hand, tweet and share your story in support of Rare Disease Day.

To stay connected with this conversation and receive alerts on new postings, please subscribe via RSS, or sign up for our monthly newsletter, Adventures in eMarketing, to receive a roundup of the top rated blog posts, associated reading lists and relevant insights.

This post was contributed by Wendy White, Founder and President of Siren Interactive. You can connect with her on Twitter @sirenwendy.

The powerful new Harrison Ford movie, Extraordinary Measures, is based on a true story about a family struggling with a rare disease. In 1998, two of John and Aileen Crowley’s children were diagnosed with Pompe Disease, a rare, inherited disorder that disables the heart and muscles. When the Crowley children were diagnosed there were no medicines to treat Pompe Disease.

John Crowley raised more than $100 million dollars to launch biotechnology companies to develop the cure. In the movie Brendan Fraser portrays John Crowley and Harrison Ford plays a composite of the researchers and scientists that collaborated with John to find a treatment.

The film documents some of the challenges that many people with rare diseases face: difficulty in finding medical experts, delay in receiving an accurate diagnosis and access to few, if any, treatment options.

What’s a rare disease?
In the United States, rare diseases, also referred to as “orphan diseases,” are generally defined as diseases that affect fewer than 200,000 individuals in the United States. There are approximately 7,000 rare diseases affecting an estimated 30 million Americans, though the number of individuals confronting any one of these disorders can be quite small. To find information about rare disorders, go to http://rarediseases.org.

This post was contributed by Eileen O’Brien, Director of Search & Innovation for Siren Interactive. You can connect with her on Twitter at @eileenobrien.

A recent discussion on ePatients made me think more deeply about the impact online tools can have on adherence. The discussion focused on a comment calling attention to the patients out there who are, “not motivated to become informed, or invest the time/energy/money in using any of these tools.”

No doubt about it. Adherence is an important topic. According to Johns Hopkins, each day about 50 million Americans either forget to take a medication their doctor has prescribed or intentionally decide not to take it. Medications that are never taken do no good at all, and there’s often a high price to be paid down the line in terms of healthcare expenditures.

For pharma marketers, this is both a challenge and an opportunity. Because, as many nonprofits have discovered, the best audience is the one you already have. That is if you can get them to listen. [Read more! →]

Saturday morning I had a brunch with some social media evangelists including Valeria Maltoni (writer of the popular ConversationAgent) who mentioned the GSK blog. I’m embarrassed to admit that, while I’m a reader of JNJBTW and was aware of the GSK blog, I don’t have it in my RSS reader.

The GSK US blog, More than Medicine, was launched in May 2009, however it started internally in January 2009 and includes content going back that far.

What’s the point?
Their stated purpose for the blog is:
…healthcare is about more than medicine.  It’s about trying to make sure that patients have access to the best care, treatment and medicines available. It’s about doctors and other prescribers being able to match the right patient with the right medicine.  It’s about each of us doing our very best to lead healthy lifestyles. Healthcare is about preventing people from becoming ill; managing diseases when they become sick; and continuing the search for better treatments and cures.

That’s why GSK started the More Than Medicine blog.  Our goal is to encourage an open, productive discussion about a range of topics related to the US healthcare system and how it can be improved.

Blog post authors are identified by their first name and there is little information provided about them.  Even the few posts by the CEO were submitted by “Andrew”.  The exceptions? Tennis star John McEnroe and singer/actress Mandy Moore who blogged about prostate health and cervical cancer awareness, respectively. The editor is identified as Michael M. and, like him, most authors appear to be employees in the corporate communications or public policy groups. There is one employee who posts from the point of view of “a busy mom”.

Reviewing the posts, there are a few of the corporate communications genre, i.e., GSK is a great place to work and a wonderful community partner. There are several posts about the need for healthcare reform and disease prevention. There are also posts on the need for transparency, which I think this blog helps to provide.

Why aren’t people commenting?
What’s striking is the lack of comments to the blog posts. What’s nice is that most comments with direct questions do receive a reply.

As of today, here are the number of blog comments (not from GSK employees or replies) broken out by month:

It’s clear that after the launch in May, engagement has tapered off.  Looking at these numbers, I’m not sure that GSK has achieved their goal of encouraging an open, productive discussion. Overall, the blog is a nice corporate communications tool for GSK, but they need to promote it so that it gets traffic and generates more comments.

The posts address timely and interesting topics, so the blog should be generating attention. At least I now have added it to my RSS feed.

This post was contributed by Eileen O’Brien, Director of Search & Innovation for Siren Interactive. You can connect with her on Twitter at @eileenobrien.

Once again, J&J has turned to social media. Needing to communicate about a recent recall of Tylenol and other medications, J&J has taken to its blog and Twitter.

On the corporate communications blog, J&JBTW, there are two posts explaining the recall. What’s unique, from a pharma perspective, is that this blog allows for comments. As of today, there are only three comments, however one of them is negative. Marc Monseau, who is the primary writer for the blog, has responded to the comment. The blog also directs to a Twitter account.

McNeil, the J&J subsidiary who manufacturers Tylenol, created @McNeilRecall on Twitter. The account seems to have been created in a hurry, since there is no logo. The bio explains that the account is helmed by Lori Dolginoff, Communications, McNeil Consumer Healthcare and additional spokespeople, during business hours. So far, the account only has 21 followers (mostly industry folks) and does not follow anyone. The account has tweeted 6 times, mostly referring readers to the press release on the McNeil website.

The website, http://McNeilProductRecall.com, has FAQ and other detailed information about the recall. Paid search ads also drive to the site. It’s important to note that the social media channels are being used as part of a broader communication plan. Does your crisis communication plan utilize social media?

I applaud McNeil for utilizing all the tools at their disposal to talk about this situation. It will be interesting to see how the @McNeilRecall account evolves over time.

This post was contributed by Eileen O’Brien, Director of Search & Innovation for Siren Interactive. You can connect with her on Twitter at @eileenobrien.

(Image courtesy of Debs via Flickr)