there are more than 40 channels on YouTube from pharmaceutical/biotech companies 

Video is an engaging way to educate patients and healthcare professionals. Per Manhattan Research: “1 in 2 ePharma consumers prefers video to text due to their learning style. The study showed that online health videos result in consumers following up on the call-to-action, with 3/4 of viewers doing additional research.” Video is especially useful for patients with lower literacy levels.

Implications for Search
Universal Search (when search results offer images and videos, not just links to content pages on websites) is becoming increasingly important. Videos, properly submitted, are 53 times more likely to generate a first page Google ranking than traditional search engine optimization techniques, according to Forrester Research.

Many pharma companies have heard this message and are creating videos that they are posting on their websites. So why not put them on YouTube as well?

YouTube is Very Popular
In January 2011, YouTube.com ranked as the top online video content property with 144.1 million unique viewers. Data from comScore showed that 171 million U.S. Internet users watched online video content in January for an average of 14.5 hours per viewer. The total U.S. Internet audience engaged in nearly 4.9 billion viewing sessions during the course of the month. If YouTube were a search engine it would be second only to Google.

Read More

in the rare disease space it's important that you realize you are joining a community not just marketing to consumers 

Siren had the great opportunity to attend the World Orphan Drug Congress on April 13-15. For three days, we were immersed in amazing content that included presentations from more than 50 contributors addressing the challenges and opportunities for the commercialization of drugs to treat rare diseases. We heard from individual patients, advocacy groups, leaders from biotech and pharmaceutical companies, and government agencies.

The theme throughout the Congress was the importance of engaging patient communities and caregivers. It was inspiring to hear the deep level of commitment companies like Shire, Genzyme, Lundbeck, BioMarin, Prosensa, and Amicus have to the patients they serve. It was clear that there is a true partnership between industry and patient groups when it comes to developing life-critical treatments.

Read More

don't design for epiphanies, design for the right sequence of baby steps 

Many rare disease therapies are injections or infusions which require a serious commitment on the part of the patients and the caregivers. Supporting adherence to these regimens is important to both the physical health of the patients and the financial health of the pharmaceutical/biotech companies.

How to support behavior change was a key theme at the health sessions at South by Southwest Interactive (SXSWi) a few weeks ago. I’ll share some insights from a few of the presentations, but first some statistics from UCB and PatientsLikeMe show that online communities can help change behaviors.

Online Communities Support Change
Data from 221 completed questionnaires found:

• 55% of respondents said PatientsLikeMe.com was ‘moderately’ or ‘very’ helpful for learning about their seizures
• 45% of respondents found the site useful for helping them chart their seizures
• 30% felt they received better healthcare from their providers as a result of recording their symptoms
• 27% said the site was useful in helping them to manage a reduction in their treatment side effects. Improved recognition of side effects, better use of coping strategies, and improved reporting to clinicians were cited as possible mechanisms
• 27% respondents reported improved adherence as a result of using PatientsLikeMe

This data supports findings from an Inspire study.

It’s important to note that UCB, who markets the epilepsy drug Keppra, sponsors the PatientsLikeMe community and therefore has access to all the patient data. This is openly disclosed and does not seem to impact patient response.

Read More

there are more than 7,000 rare diseases that, taken together, affect about 30 million Americans 

In the past few months, there’s been an increase in media attention to rare diseases. National Public Radio (NPR) has featured two segments on rare diseases and The New York Times had an interactive piece on six rare disease patients and the other day highlighted Charcot-Marie-Tooth disease.  Rare Disease Day (the last day of February) was also recognized by a wide variety of news outlets.  Even an episode of “Chopped All-Stars” on the Food Network featured a chef competing to win funds for a rare disease foundation.

This is quite a departure from what once could be described as an ignored, isolated group of patients and caregivers.  Are rare diseases becoming mainstream?

Though a rare disease by definition affects fewer than 200,000 people in the U.S., there are more than 7,000 rare diseases that, taken together, affect about 30 million Americans. And, as the NPR pieces discussed, this is a web-savvy, vocal bunch.  With doctors having never heard of many of the diseases, caregivers and patients alike turn to the web and social media to find out more and to find others like them.  Quickly, they become both experts and advocates.  They use any outlet they can find to get the word out, whether it is creating a foundation or a Facebook group.  Either way, they refuse to suffer quietly.

Read More

this seems like a pretty straightforward story, but the reality is more complicated 

The publicity surrounding KV Pharmaceutical’s pricing and handling of the drug, Makena, is now having larger implications for rare disease therapies.

The History
The drug, a form of progesterone called 17P, was used for years to reduce the risk of preterm birth, but fell out of favor after Bristol Myers Squibb stopped manufacturing the injectable in 2000. An NIH study in 2003 demonstrated its effectiveness which led to renewed popularity. Since no company made 17P, it could only be obtained from pharmacies who compounded it in individual batches.

The drug had no patent protection, so KV Pharmaceutical spent an estimated $200 million to develop 17P and conduct a clinical trial. The drug was branded Makena and the FDA granted it orphan drug status. Makena was given approval on February 4, 2011 to reduce the risk of preterm birth in women with a singleton pregnancy (one baby) who have a history of singleton spontaneous preterm birth. The Orphan Drug Act provides seven years of exclusive sales rights to manufacturers who win FDA approval for drugs that affect fewer than 200,000 people. The purpose of the Orphan Drug Act is to provide incentives to encourage pharmaceutical and biotech manufacturers to invest money and resources on developing treatments for very small patient populations.

Read More

there are lots of tactics that are possible right now – and examples of companies that are using them 

For the past few months, one of the most popular questions among pharmaceutical marketers has been: Will the FDA release social media guidelines or not?  Well, the current answer is no.

The FDA’s latest self-imposed deadline (first quarter of 2011) has passed without draft guidance. Industry veterans who attended the first hearing on the internet back in 1996 are unsurprised. The lack of formal guidance on the internet hasn’t stopped pharma/biotech companies from taking full advantage of the power of the web. The good news: even without FDA guidance on social media there are lots of tactics that are possible right now – and examples of companies that are using them.

It’s the Message, Not the Medium
Pharmaceutical marketers should continue to apply existing FDA guidelines to the internet and social media. Be sure to focus on applying fair balance. The majority of letters received regarding social media, such as YouTube or Facebook, have focused on issues with the message not the medium.

The Pharma Social Media Basics
Here are some low-risk social media tactics that every pharmaceutical company should be considering.
Read More