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)

Last night I attended #140Conf Philly Meetup. Translation: I went to a free event in Philadelphia about the power of real-time social media tools led by Jeff Pulver. Pulver is the co-founder of Vonage and a guy fascinated by the next thing.

Pulver spoke about the instantaneous and disruptive power of Twitter and used the example of the Iran election. Sadly, as the event was going on, many of us learned via Twitter about the tragic earthquake in Haiti.

Pulver advised, “In 2010 every single biz should have a chief listening officer. If someone reaches out and finds silence, another biz will connect with them.”

Ironically, some of the key insights weren’t related to social media but real life. “The next person you meet might change your life. Or you might change their life,” said Pulver. “My two takeaways from last year were humanity and serendipity. Let yourself be a little bit vulnerable.”

A few speakers made the important point that the power does lie within the social media tool, whether Facebook, Twitter, etc., but in the ability to network and engage in a community. In the end, it all comes down to the human need to belong, whether online or in real life.

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

Tonight – January 6, 2010 – I’ll be leading the first tweetchat dedicated to pharma marketing. While there are social media chats and healthcare chats on Twitter, there is nothing specific to pharma.

What’s a tweetchat?
As you might gather from the name, it’s a chat that takes place on Twitter. At a designated day and time people go on Twitter to talk about a particular topic. Usually the chats are moderated by someone who leads with introductions and questions for discussion. To allow people to follow the chat there is a designated hashtag (#).

Tweetchats are a great way to learn what others have to say, share your opinion and meet other tweeters interested in similar issues.

Don’t have a Twitter account? You don’t need one!
Tweetchats are an excellent way to get introduced to Twitter since you don’t even need to have an account. Simply go to http://twitter.com and in the search box type the appropriate hashtag.  To follow along January 6 at 8 pm EST, type #SocPharm. You’ll then see the conversation unfold.

I encourage you to sign in for a free Twitter account and take part.  If you want tips on how to use Twitter, take a look at this presentation or tweet me @eileenobrien, I’m happy to help.

#SocPharm every Wednesday at 8 pm EST
If you can’t make it this Wednesday, catch us next week. Transcripts will also be posted on the Social Pharmer community, which is a resource for pharma marketers. If you are interested in overall healthcare marketing check out the tweetchat #HCSM on Sundays at 8 pm CST, and for a European focus follow #HCSMEU on Fridays at 1 pm CET.

This post was contributed by Eileen O’Brien, Director of Search & Innovation for Siren Interactive.

(Image courtesy of Rodrigo Senna via Flickr)

Of the 3 billion medication prescriptions issued annually in the U.S., 12% are never picked up by the patient and 40% are not taken correctly. This statistic is from a recent report, “Technologies for Optimizing Medication Use in Older Adults,” produced by the non-profit Center for Technology and Aging.

Another startling statistic: Medication non-adherence is responsible for up to 33%-69% of medication-related hospital admissions and 23% of all nursing home admissions. It’s clear that adherence programs are not only an opportunity for pharma marketers to sell more drugs, but to make a difference in the health of many patients and reduce healthcare costs.

This data is a powerful incentive for pharmaceutical companies to use technology to make an impact on the problem of medication adherence.

How can pharma make a difference?
By offering relationship marketing programs that truly meet the needs of patients. Provide targeted, custom content that helps the patient (and caregiver) along their journey. If done correctly, these programs can be very successful. According to an October 2008 study by Epsilon, 48% of respondents said the email they received from pharma companies helped them stay on their medication.

It’s also important to provide content in a format that’s relevant to patients. An excellent example is a study, published in Pediatrics, that showed text messaging significantly improved the rate of adherence among young liver transplant patients.

Hat tip to Fierce Healthcare and The New York Times for bringing these studies to my attention.

This post was contributed by Eileen O’Brien, Director of Search & Innovation for Siren Interactive.

(Image courtesy of Rodrigo Senna via Flickr)

The last few months at Siren have been busy ones, and they’ve capped off a really good year.

I am pleased to announce our most recent additions to the Siren team. Eileen O’Brien has joined us as Director of Search and Innovation and Gundars Jegers is our new Creative Director.

Eileen will be overseeing search strategy and emerging media, including social media, for the agency. Working virtually from Philadelphia, she will also be Siren’s liaison for East Coast clients.

She has 14 years of digital healthcare marketing experience, including her most recent role at Compass Healthcare Communications, a digital pharma agency. She also held marketing positions at Virtua Health, University of Pennsylvania Health System, Graduate Hospital, and the Rothman Institute.

Gundars will be overseeing the creative team. He brings over 20 years of integrated marketing experience to this task, including 10 years of experience in interactive. Most recently, Gundars led the digital creative team in Chicago for JWT Inside. He has done work for clients such as Abbott, Boehringer Ingelheim, Epi-Q, University of Michigan Health System, and AstraZeneca.

Look for posts from our latest additions to the Siren team in the coming weeks.

Angela Romano, Content Intern at Siren Interactive, contributes this post:

It finally happened — the FDA hearing on social media that people had been demanding for more than a year was held on November 12 and 13th. The FDA held a public hearing on the use of social media by pharma and medical device companies. These hearings were the first step toward developing guidelines around this type of marketing for the industry. With more than 800 people trying to get into this event and 76 presentations, it marked a historic moment in FDA history, considering the last hearing on internet related material happened in 1996. The question of the day: how far can Twitter, Wikipedia, blogs and other social media go in promoting drugs?

The two day hearing was designed to poll expert opinion from a wide range of experts on five key areas:

• For what online communications are manufacturers, packers or distributors accountable?
• How can manufacturers, packers or distributors fulfill regulatory requirements in their Internet and social media promotion, particularly when using tools that are associated with space limitations and tools that allow for real-time communications?
• What parameters should apply to the posting of corrective information on Web sites controlled by third parties?
• When is the use of links appropriate?
• How should adverse event reporting be addressed online?

[Read more! →]

Smartphones are on the growing edge of the economy. The Wall Street Journal recently reported a 63% increase in U.S. adoption of smartphones. What impact will this have on the world of rare disorders? It could be considerable.

Adoption by Physicians

Interestingly, some of the biggest growth in smartphone use is taking place among physicians. According to a recent study by Manhattan Research, 61% of physicians currently use smartphones, and smartphone adoption rate is expected to reach 81% among physicians by 2012. [Read more! →]