Use of these materials results in action: a conversation about a prescription drug 

The latest Manhattan Research ePharma Consumer® study confirmed that pharma-supported interactive materials benefit both patients and pharma.

Reliance on pharma-sponsored digital resources among online U.S. adults is significant. The research found “51% of online U.S. adults (ages 18+) use pharma-sponsored digital resources, such as condition and treatment information, disease management tools, doctor discussion guides, or mobile apps or websites.” This validates that the interactive information and tools produced by biopharma are being utilized and appreciated.

For patients with a chronic condition, the reliance on pharma-sponsored digital resources was even greater. The study learned 75% of angina patients and 68% of rheumatoid arthritis patients take advantage of these interactive materials. These findings support Siren’s 11-year experience working with rare disease patients. For many rare diseases there’s a lack of comprehensive information and support tools. Often this need is filled by biopharma companies, and the materials are highly valued and utilized by rare disease patients – and physicians.

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Users can now add clickable links to their Facebook, Google+ and Twitter accounts along with a list of other links 

At the end of 2011, YouTube redesigned their homepage and rolled out a new layout for channels. According to our rep, channel owners have until March 1 to migrate to the new design. After March, channels will automatically be transitioned. The good news: pharma has been granted an exception and can wait until June 1 to make the change. Kudos to Google for being sensitive to the regulatory constraints on pharma and recognizing that getting a new design reviewed and approved takes time.

What is a brand channel?
There’s some confusion over a YouTube “brand channel” versus a YouTube channel. What’s the difference? Advertising. These customized “brand channels” are developed by a company or brand in conjunction with YouTube and requires a significant advertising spend. Pharma examples including Johnson & Johnson Health channel and SanofiTV.

In contrast, a YouTube channel is free and can be designed within specific parameters. Per YouTube, a “channel page shows a user’s profile information, uploaded videos, favorite videos, subscribers and more.” The confusion stems from the fact that a brand or company can be a “user” and have a YouTube channel.

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Anyone interested is welcome to take part on a Wednesday evening 

I’m pleased to announce the biopharmaceutical marketing and social media tweetchat, #SocPharm, celebrated its second anniversary. If you aren’t familiar with tweetchats, they are simply conversations held via Twitter around an area of interest at a pre-arranged time. The #SocPharm tweetchat is every Wednesday from 8 to 9 pm EST.

The chat includes people who work for biotech and pharmaceutical companies, agencies and associated services, but patients, doctors and nurses also occasionally join in. The idea is to get a variety of perspectives and to share best practices as we all figure out this whole new world of biopharma marketing.

The topics range from breaking news to larger issues, such as the use of Facebook for branding and the growth of mobile apps. The moderator starts off with introductions and then raises a topic for discussion. Everyone tweets about the question (using the hashtag #SocPharm), and the virtual conversation goes back and forth. About every 15-20 minutes, the moderator presents a new topic.

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it can be in the best interest of public health for a firm to respond to unsolicited requests for information about off-label uses of the firm’s products 

While I was enjoying the holidays by sleeping in, sipping wine and spending time with family, the FDA quietly released “Guidance for Industry Responding to Unsolicited Requests for Off-Label Information About Prescription Drugs and Medical Devices.”

Ad Age called the document “social media ‘guidelines’” apparently because it mentions Twitter and YouTube in examples. While it isn’t true social media guidance, former FDA official Peter Pitts provides insights to be gleaned from reading between the lines. His big one: “Pharma, guide thyself.”

What I found most interesting in the document is the FDA’s acknowledgment that “it can be in the best interest of public health for a firm to respond to unsolicited requests for information about off-label uses of the firm’s products that are addressed to a public forum, as other participants in the forum who offer responses may not provide or have access to the most accurate and up-to-date information about the firm’s products.”

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In rare diseases it's uniquely true that pharma needs the patients and the patients need pharma 

PharmaPhorum asked Siren Interactive to write a series of blog posts about the world of rare diseases. In the six-part series, titled “Rare is different,” we’re showing how working within rare diseases is unlike other pharma markets, particularly in the knowledge and influence wielded by patients and caregivers.

I wrote the fourth post, “Rare disease patients and caregivers want pharma to participate.” As noted previously, a typical physician might never encounter a patient with a rare disease over the course of his or her entire career. It’s understandable that most physicians develop expertise to do the greatest good for the largest number of patients. This leads to many rare disease patients and caregivers becoming unusually empowered. Out of desperation they take control of their own and their offspring’s care. They look for the latest information about research, clinical trials and treatment options. They welcome pharma’s participation as long as pharma is adding value by providing the information, tools and support that rare disease patients and caregivers can’t get anywhere else.

In rare diseases it’s uniquely true that pharma needs the patients and the patients need pharma. In my post I share the stories of a rare disease caregiver and a rare disease patient, each of whom is the founder and leader of a patient advocacy organization. They have both succeeded in developing effective relationships between pharma and their own organizations. Let me know what you think in the comment section.

(Image courtesy of zeyneep on Flickr.)

That's 10,800 units of Allegra sold coming from the Facebook page 

Last week I spoke at the Advanced Learning Institute’s Social Media for Pharma conference in New York City. “The pharma paradox is everybody wants to be innovative but nobody wants to be first,” said cochair, WPP’s Bill Evans. What was great about this intimate event was the specific case studies shared that offered examples for other companies. I’m going to highlight a few that resonated with me.

Facebook Page Contributes to Bottom Line
Shermon McMillan, Senior Marketing Manager from Chattem, a Sanofi Company, and William Martino from Saatchi & Saatchi Wellness discussed Allegra’s marketing efforts during the transition to over-the-counter. As part of their strategy, the Allegra team created a Facebook page with an open wall to communicate with their large target audience. The team has all of the content preapproved by medical/legal, and they work 2-3 months ahead. They have a variety of frequently asked questions, standard responses and thanks messages pre-approved. Many of these are also used for Allegra’s Twitter account. The brand team promoted the social media tools via ads, including Facebook ads.

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respondents wanted a clear understanding of how they'll benefit from giving up data 

How much private information are you willing to share online? It probably depends upon who is asking, what you are getting in return and how much value it has to you. McCann Truth Central performed a quantitative study on privacy including 6,525 global consumers in July 2011 across 6 markets – UK, USA, Hong Kong, Japan, India, and Chile.

The researchers discovered a new understanding of the word privacy. “…‘privacy’ is a complex, multi-dimensional issue that encompasses everything from personal, real-world snooping to sharing data online. Further, when it comes to data sharing one must unpack the issue even further as consumers categorize data into different categories, e.g. shopping, location, personal, medical, and financial, and have varying degrees of concern with sharing each type.”

While the study found anxiety about the potential threats to reputation and finances, consumers were accepting of the use of personal data (including the text of emails) to serve up targeted ads online. And there was good news for pharma: pharma ranks among the industries that  survey respondents trust most to safeguard their data – behind only banks and credit card and medical companies.

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at the center of healthcare innovation is the patient/caregiver 

“Passion isn’t enough to make a difference,” said Pat Furlong, president of the Parent Project Muscular Dystrophy (PPMD), regarding the ways patients and caregivers in the rare disease community can impact changes in healthcare. “You must listen, be open and flexible, make decisions, and execute the plan.”

As the founder of PPMD and mother of two sons who lost their battle with Duchenne in their teenage years, Pat speaks from experience. PPMD is the largest nonprofit organization in the United States solely focused on Duchenne muscular dystrophy. Read more about this organization.

Pat was one of three participants in the Healthcare Businesswomen’s Association’s panel discussion on global healthcare changes and their impact on patient advocates, corporations, and the world. The other two participants were Dr. Freda Lewis-Hall, chief medical officer at Pfizer and HBA’s “Woman of the Year,” and Jeneanne Rae, founder and president of Motiv, experts in design strategy and innovation.

Siren’s president and CEO Wendy White moderated the esteemed panel before an audience of about 700.

The Power of the Patient in Times of Change
The panel was in full agreement that the current health system needs to change. Each woman had her own perspective, but each agreed that at the center of healthcare innovation is the patient/caregiver. When it comes to getting involved in the drug approval process for a rare disease, Pat thinks the government listens to patients and caregivers. “A room full of 10 crying moms is hard to deny,” she explained. And when it comes to challenges of getting treatment paid for, she feels that patients will no longer take “no” for an answer. She also thinks that the cost of not treating patients is much higher than the cost of treating them.

Along those lines, Jeneanne Rae contended that it is time to move from a sickness-based healthcare model to a wellness-based healthcare model.

Freda Lewis-Hall agreed. She said that it is time to innovate the model of innovation in healthcare. Read More

These patients naturally turn to social media to find information and each other 

PharmaPhorum asked Siren Interactive to write a series of blog posts about the world of rare diseases. In the six-part series, titled “Rare is different,” we’re showing how working within rare diseases is unlike other pharma markets, particularly in the knowledge and influence wielded by patients and caregivers.

I wrote the fourth post, “Patients and caregivers are undisputed ‘power users’ of social media.” When a disease is rare, finding information about diagnosis, treatment and physicians is more challenging than for a more common disease. These patients naturally turn to social media to find information and each other. These online connections can be extremely powerful, not only for emotional support, but for treatment information.

Read my post to learn more, including stories from rare disease caregivers who have experienced this firsthand.

(Image courtesy of  WebTreatsEtc on Flickr).

the value of any communications network increases proportionately with the square of the number of users 

Last week Google+ opened pages up to businesses. When I was setting up the Siren Interactive page I was surprised to find a few things. The first is that there is no verification that you are from the company—for example, by using a company email that gets verified before the page goes live. Google only requires you to check a box that says, “I agree to the Pages Terms and I am authorized to create this page.”

I searched for a few pharma companies and found two pages when I typed in “Pfizer.” I highly doubt that either page is really from Pfizer, so it will be interesting to see how Google handles these imposter pages. This was previously an issue on Facebook, where at one point the fake Sanofi page was more popular than the real one.

A second surprise is that the administrator tools aren’t very advanced. For example, it appears that a brand or company page can only have one administrator. Also, the design of the pages are similar to Facebook.

Is Your Audience on Google+?
Google+ has an estimated 50M users versus Facebook’s 750M, and after an initial wave of enthusiasm, the number of weekly visitors to the site has fluctuated.

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