Today we profile a real-life example of Big Pharma supporting patient education and interaction through social media. Bristol-Myers Squibb provided unrestricted funding to facilitate the launch of a new site for women with advanced breast cancer.

The Advanced Breast Cancer Community launched in early September offering both an information gateway and social network for the advanced/metastatic breast cancer community. Why another site dedicated to cancer? Because those living with advanced breast cancer have had no single site to call their own. A wealth of information exists for these women but it is often buried within sites making it cumbersome and exhausting to find.

The new site is their gateway. As one user commented, “Early on in my diagnosis I perused many Internet sites that just left me more confused, scared and depressed than I already was. So I gave up looking. Until something brought me to this site just yesterday. What a great place. I can tell already that this is the place where I want to hang out.”

The Advanced Breast Cancer Community is built on tools from Inspire, a company that creates and manages online health communities in partnership with dozens of leading nonprofits, e.g. Arthritis Foundation, WomenHeart, National Osteoporosis Foundation.

Perhaps the most impressive thing about the initiative is that it involved buy-in from 13 non-profit organizations! See the list of participating breast cancer patient advocacy organizations below.

AdvancedBC.org
Breast Cancer Network of Strength (formerly Y-Me)
Breastcancer.org
Breast Cancer Research Foundation
CancerCare
The Linda Creed Foundation
Living Beyond Breast Cancer
Metastatic Breast Cancer Network
SHARE
Sisters’ Network
Susan G. Komen for the Cure
The Wellness Community
Young Survival Coalition

Attending clinical conferences online is gaining in popularity, and with the economy teetering on the brink it’s not hard to figure out why. In a recent ePharma report from Manhattan Research, the author pointed out that virtual conferences attendance has grown at a double-digit rate over the past three years.

To capture some of the expected dollars that will likely flow in this direction, media giant HAVAS (parent of Euro RSCG Life) has launched Havas Drive to create virtual symposia environments. They are partnering with WebMD’s Medscape to market their first offering, “Virtual Convention Booth,” to pharma companies. In the works are Virtual Detail, which will enable a virtual sales rep to deliver a detail in a 3-D environment, and Virtual Hospital, a simulation tool aimed at teaching hospital staff how to optimize patient care.

Last week I wrote about the Revolution-Waterfront merger. If you’d like more perspective on the deal, there is an excellent interview on the Health Business Blog between David Williams and Mark Bard, CEO of Manahttan Research.

Recently I highlighted the top 10 pharma sites visited by PCP’s (Manhattan Research). Now comScore, Inc. has released its own study of the top pharmaceutical brand sites, but this one is based on all users, not physicians only, and is period specific. Thus not apples to apples. That said, it is interesting to note that there is not much crossover between the two studies. Only three sites appear on both: Actos, Gardasil and Januvia.

Top 10 Pharmaceutical Brand Web Sites by Unique Visitors
Q2 2008 vs. Q2 2007
Total U.S. – Home/Work/University Locations

1. Nexium - 1,021,000 (up 55% from 2Q 2007)
2. Actos - 855,000 (+2399%)
3. Ambien CR - 756,000 (-61%)
4. Gardasil - 722,000 (-21%)
5. Lexapro - 549,000 (+3%)
6. Veramyst - 538,000 (launched in 08)
7. Januvia - 507,000 (+329%)
8. Lyrica - 501,000 (+36%)
9. Topamax - 498,000 (+38%)
10. Seroquel - 447,000 (+24%)

Some highlights from the study:

Takeda substantially increased marketing for the Actos brand beginning in 3Q 2007, helping build actos.com into the second most visited site in the category.

Pfizer has boosted marketing and public relations efforts for Lyrica since 3Q 2007, when the product was approved for the treatment of fibromyalgia.

Diabetes drug Januvia recorded a 330% increase in visitors to its site after Merck increased marketing activity in the second half of 2007.

Steve Case was going to change healthcare forever. “Our mission is to revolutionize the health-care system,” he said in an interview upon Revolution Health’s debut in 2007. For those of us who have been around the healthcare block a few times, we usually roll our eyes when someone with no background jumps into the fray promising to “fix” everything that ails healthcare. Well it’s over for Steve and he didn’t quite overhaul the system.

Late last week, Revolution Health announced its intention to merge with NY-based Waterfront Media, home to Everyday Health and multiple diet-related sites like the South Beach Diet and My Calorie Counter. The combined company will host 24 health and wellness sites and operate under the Waterfront umbrella with Benjamin Wolin, current Waterfront CEO, at the helm. Case will join the board.

The deal puts Waterfront in a solid position to compete with WebMD. According to comScore Media Metrix, Everyday Health was the second most popular health site in July 2008, with 14.7 million unique visitors and the Revolution Health sites came in third, with 11.3 million visitors. The NY Times valued the deal at $300 million.

Another cool medical app for iphone - this one is for ophthalmologists. Developed by a Brazilian physician named Renato Neves, EyePhone contains 7 practical ophthalmic tests: near visual acuity, Ishihara color test, Amsler grid, a powerful flash light tool, pupil gauge, target for fixation and Distance E.

One user wrote, “This one is brilliant and deserves a lot more publicity.” Ok - here is some.

OK, nothing earth shattering but a real-world example of pharma engaging in the new world. Abbott is supporting a series of podcasts on Crohn’s called Speaking from the Gut. Humira, a treatment for Crohn’s, is manufactured and marketed by Abbott.

Physicians and other providers talk about diet, nutrition, the emotional impact of the disease and its effect on relationships. Each Crohn’s Cast also includes a first-hand account from a person living with Crohn’s. Sample topics:

• Food—Friend or Foe
• Enjoying Eating
• Understanding the Mind-Gut Connection
• Coping with Crohn’s
• Dating Dilemmas

One of the most common refrains I hear from pharma execs is that they are reluctant to participate in social media because of the potential regulatory implications. While I would never discount these concerns, I wanted to point to an excellent white paper recently published (August 2008) by Nielsen Online: Listening to Consumers in a Highly Regulated Environment: How Pharmaceutical Manufacturers Can Leverage Consumer-Generated Media.

The section that most caught my attention focused on the rate of adverse events found on message boards and social networks. Think it’s high? Think again. The study found that only 1 in 500 messages analyzed met all four of the FDA’s AE reporting requirements. Read the excerpt below to get more details. I think the entire paper is well worth a read and you can download it here at no charge.

Thank you to Melissa Davies, the author and research director at Nielsen, who granted permission to excerpt the section on Adverse Events from Nielsen Online’s August 2008 white paper - Listening to Consumers in a Highly Regulated Environment: How Pharmaceutical Manufacturers Can Leverage Consumer-Generated Media

Social Media and Adverse Event Reporting

Any pharmaceutical company considering an entry into the social media space will naturally wonder about discussion of adverse events. Are consumers sharing information online that would indicate an adverse experience? Does social media monitoring trigger the AE reporting requirement?

At this writing, there is no FDA guideline or regulation that specifically covers the content of online discussion in a way that is different from reporting AE information derived from any other source. Current FDA guidelines give four parameters for submitting information about adverse experiences: the pharmaceutical company should have knowledge of (i) an identifiable patient; (ii) an identifiable reporter; (iii) a specific drug or biologic involved in the event; and (iv) an adverse event or fatal outcome. (From FDA’s “Guidance for Industry: Postmarketing Adverse Experience Reporting for Human Drug and Licensed Biological Products: Clarification of What to Report,” issued August 1997; available online at: http://www.fda.gov/cder/guidance/1830fn1.pdf.) According to the guideline: “If any of these basic elements remain unknown after being actively sought by the applicant, manufacturer, or licensed manufacturer, a report on the incident should not be submitted to the FDA because reports without such information make interpretation of their significance difficult, at best, and impossible, in most instances” (emphasis added). A draft guideline for filing individual case safety reports related to OTC treatments was posted on the FDA website in October 2007; it reiterates these same four parameters and again states that the responsible person should “wait to submit a report on the incident to the FDA until the information is obtained.”
This raises a key question: When adverse experiences are mentioned within consumer-generated media (CGM), do they meet the FDA’s criteria for reporting?

In a recent Nielsen analysis of 500 healthcare-related messages posted online across multiple disease categories, Nielsen’s BuzzMetrics analysts found only one message that incorporated the information needed to meet all four of the FDA’s AE reporting requirements. In this message, a caregiver whose mother was taking chemotherapy reported that her mother experienced abdominal fluid retention, noted that this was not a listed side effect of the medication, and inquired in the online community whether this fluid retention might be a sign that the medication was working.

A note on identifiable reporters: Though the FDA guideline does not specify what constitutes an identifiable reporter, the 2007 draft guideline for OTC reporting notes that in order for an AE report to be submitted to the FDA, there should be “sufficient information for the responsible person to follow-up, such as a phone number or e-mail address.”

Most online discussion communities discourage the use of personally identifiable information. This is especially true within healthcare communities, where personal privacy is even more carefully guarded. For example, WebMD’s Terms and Conditions of Use include the following: “To protect your privacy, you agree that you will not submit any media that contains Personally Identifiable Information (like name, phone number, e-mail address or web site URL) of you or of anyone else.” Other websites use similar language to caution participants against revealing personal information.

In the recent analysis of 500 messages, Nielsen’s BuzzMetrics analysts found that 56 messages (11%) contained identifying information that could be used to reach out to an individual to follow up on a possible AE report. It is important to note that all of these messages came from Yahoo! or Google groups, rather than from discussion boards. Groups use their members’ e-mail addresses as their online identification; this is a key difference from discussion boards, which use less identifiable screen names for members’ online ID. This use of e-mail addresses provides contact information that could be used to follow up with a reporter to gather the details that would be needed for an AE report.

14 messages mention both a specific medication and an identifiable reporter 4 messages mention an adverse experience and include an identifiable patient and a specific medication 1 message also includes an identifiable reporter

Among 500 messages analyzed, one message incorporated all four AE reporting criteria

It is clear that a pharmaceutical company that aggressively monitors social media may pick up the occasional AE within patient/caregiver online discussion. Nielsen Online’s experience is that this happens very rarely, with a volume that is entirely manageable within companies’ broader AE monitoring programs.

The Cephalon-Takeda partnership to market Provigil, a prescription drug to promote wakefulness, may be falling apart but the companies did a nice piece of 2.0 work together.

They launched a sleep tracker tool to help those with excessive sleepiness monitor their condition and compare results with others. This widget can be added to a favorite reader or embedded in a web page. Results can be printed out to share with a physician. There is also a video diary that showcases patients talking about their condition, struggles and experiences.

Manhattan Research, a data fave of mine, recently published another of its many studies related to technology adoption by physicians. This one is specific to the pharma industry: ePharma Physician® v8.0.

Among the findings, not surprisingly, is that physicians want to access pharmaceutical research and information online. Today physicians conduct 41% of their pharma research online, but expect to increase that percentage to over 50% in the near future.

According to the study, these are the top 10 pharma product sites in 2008, as ranked by the number of U.S.-based primary care physician visitors:

1. Januvia
2. Actos
3. Chantix
4. Gardasil
5. Actonel
6. Vytorin
7. Amitiza
8. Byetta
9. Avandia
10. Aciphex

Meredith Abreu Ressi, research vp at Manhattan Research, commented, “Pharmaceutical companies need to ensure that brand websites contain the latest, most accurate content possible and can be found relatively easily by physicians using search engines to research pharmaceutical information.”

I’ve been remiss in posting, not for lack of material, but rather for lack of time. I am going to try to get this blogging thing down so that each post doesn’t take hours to write, which is my own fault I admit. In the spirit of shorter posts that also provide readers with insights into this Pharma 2.0 space, here is my first stab.

Mobile apps that focus on health and wellness for both consumers and professionals are burgeoning. There are nearly 100 different iPhone applications available today at the iTunes store. With Steve Jobs predicting sales of 10 million iPhones by the end of 2008, it is likely that individuals and providers will be using their phones and PDA’s for more of their health management. I’ll be profiling different health applications in the coming weeks because there are so many interesting ones.

First up is Medical Calculator from MarketWall. This free download was designed to help doctors and nurses compute useful formulas and equations they frequently need. Examples include:

• Body Mass Index (BMI)
• Bicarb Deficit
• Fractional Excretion of Sodium (FENa)
• MELD Score (Model for End-Stage Liver Disease)
• Parkland Burns (fluid requirements for first 8 and 24 hours)
• Pregnancy Wheel
• Renal Failure Index

One physician reviewer wrote, “Granted that not all medical calculations are here, but many essentials are. This does indeed have room for improvement, but I’ve been waiting for one of these programs since getting the iPhone.”