A blog exploring pharmaceutical relationship marketing, emarketing and innovation with a focus on rare disorders.
The convergence of rare disease, digital communications, and pharmaceutical marketing communications

Social Networking And Rare Diseases

Posted by | 1:04am on Friday, November 21, 2008

FacebookThe online channel is quickly becoming a dominant (if not the dominant) source of health information and recently a means for patients to connect and share their stories.

Almost 80% of Americans with internet access have searched for health information online. And with 73 million American on MySpace and 36 million on Facebook, online social networking has truly blossomed in recent years. Thus, the online channel serves both as a means to gather information as well as to connect with others. There is no doubt that patient communities are coming together online to share information, recommend doctors or treatments, and sympathize with each other. A simple search on practically any social networking site turns up dozens of online patient groups.

However, what are some of the concerns for pharma marketers about becoming involved in social networking? And why are niche markets especially viable options?

Impediments to Social Networking

With all of the hubbub around social networking, what is stopping pharma from getting involved? And what are the hurdles for pharma marketers if they do start to engage patient communities in this venue?

  • Adverse event reporting: Any adverse events, which include complaints about injuries caused by a drug’s side effects, by law must be reported to the FDA. Lawyers regularly search these FDA databases for potential class-action suits, claimed a recent Business Week article. This is a strong deterrent for many pharma marketers. However, that same article went on to quote an expert who claimed that “[e]arly warning signals that there may be a safety issue really puts the company in a stronger position in terms of potential exposure to product liability suits.”
  • In the comments section of that article, and in a post on her blog, Wendy Blackburn also lays out the issues of off-label marketing, product claims, and fair balance and PI. All of these elements either strictly inhibit what pharma marketers can “say” about a particular product, or require long disclaimers – none of which is particularly convenient on social networking websites.
  • Privacy: Synovate, a research services company, surveyed with 13,000 people in 17 markets across the globe about their social networking behavior. The biggest concern about online social networking was a lack of privacy (37% of respondents). And patient populations will certainly be more apprehensive to share their information than the general public in this survey. While pharma marketers have unique impediments of their own, if the patient populations are unwilling to participate, then it is all a moot point.
  • The right audience: One more thing to consider is whether the particular audience is on social networking sites in the first place. The Synovate survey found that 30% of Americans did not even know the meaning of “online social networking.” If your audience isn’t in these venues to begin with, there is little sense to try to build an audience from the ground up.

Niche Pharma’s Opportunity?

If pharma marketers can navigate those potential problems, a prime starting point would be smaller patient populations with rare diseases.

  1. Due to the very low number of people who have a rare disease, patients can often feel isolated. In post after post patients and caregivers talk about their isolation and the huge opportunity the rise of the internet has provided. For many it’s the first time they have had a chance to connect with someone else with the same disease. They are some of the most motivated people online.
  2. It is also hard for marketers to learn about the effects of rare diseases. Sometimes what patients (assuming you can find them) say in focus groups is not what they say to each other. By listening to the patient populations marketers can better tailor their service offerings and educational opportunities to exactly what the patients are asking for in their own language.
  3. Storytelling is one of the most powerful forms of communication we humans posses to convey ideas. Social networking allows us to share our stories about deeply personal issues that allow us at our best to work together and make better.

Do you participate in social networking? How have you used social networking to connect with your audience? What roadblocks did you face? How have industry regulations affected this process? I would love to hear your stories and suggestions in the comments section below.

(Image courtesy of Jacob Botter via Flickr)

About Wendy White

Since founding Siren Interactive in 1999, Wendy has been recognized as a thought leader at the intersection of niche pharma brands, patient empowerment and online marketing. Her vision for how the internet can facilitate interactions and provide crucial information that patients, caregivers and their healthcare providers previously struggled to find has propelled Siren to the forefront of relationship marketing for rare disorder therapies.

View other posts from Wendy

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