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

Influence the Debate

Posted by | 2:14am on Thursday, February 19, 2009

Since patients are continually going online for information and support, marketers have the opportunity to effectively connect with them through this channel. 

There is only one internet. And regardless of who is posting information to it or where the information is being posted, there is an ongoing debate around most disease states. Ultimately, everyone who participates in this debate wins, but there are a few things to keep in mind. Whatever you write for public consumption on the internet needs to be written to the entire community – and ideally, the entire community has a role and responsibility to participate in these discussions.

Who are the key participants?

HCPs – can influence the debate by sharing their expertise and experiences to primary care physicians. HCPs have the ability to vet good information on the internet that their patients are reading and/or participating in.

Pharma – has an opportunity to influence the debate by not trying to control the messages, but by finding and understanding what is being said by the community and embracing these communication streams.

Patients – can influence the debate by sharing their stories, experiences and communities to which they have access. As we see happening all over the internet, even in healthcare, consumers own their own brands.

So, why do patients with rare disorders go online for information and support?

Here are three main reasons:

  1. Distance. Patients with rare disorders are scattered across the country. They may never have the opportunity to meet another person with their disorder. The Washington Post had a good e-patient story illustrating this the other day: Sharing The Pain: Rare Disease Puts an AU Economist in Touch With Fellow Patients Around the World
  2. Accessibility. Finding information in other places besides online is usually difficult.
  3. Information overload. Specialists have so much information coming at them that they can’t keep up with everything around specific rare disorders. As a result, patients and caregivers must educate themselves and become experts on their disorders.

Patients with rare disorders are even more likely to be active participants

If you’ve read my previous posting about knowledge symmetry, you’ll know that there is an interesting thing happening in the rare disorder world. The information around rare disorders directed at patients from the most forward-thinking companies reads almost the same as the information directed at HCPs. Cerezyme has a website that serves as a great example. And this is just as it should be. Patients with rare disorders are becoming experts and gaining more knowledge to take control of their own condition. Also, because caregivers must take on an even more important role to be effective for their patients with these disorders, they must be as educated as possible.

How does it differ when marketing to patients with rare disorders?

Since patients are continually going online for information and support, marketers have the opportunity to effectively connect with them through this channel. Pharma marketers can provide the important information that patients seek and provide them with the right tools to support their patient journey.

How have you used the internet to empower patients with the knowledge to influence the debate? I’d love to hear your ideas, so please share your thoughts in the section below.

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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

  • David I

    Hi Wendy, I just came across your post and really enjoyed your insight into this subject.

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