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

The Patient Journey

Posted by | 5:43am on Tuesday, February 24, 2009

By communicating with them in a familiar way and seeing the work through their eyes, you can ensure your message will resonate with one that is focused around key transition points along each patient’s individual journey 

The internet allows relevant and compelling messaging that intersects patients at the best time, moving them more efficiently toward therapy, support and better outcomes.

If a patient’s journey is mapped out through diagnosis, life changes, conversions and adherence issues, specific messages at just the right time could help support where there are the greatest fallouts.


There was an article yesterday in the New York Times Magazine about diagnosing rare disorders.  As demonstrated in the article, the limitation of knowledge is a prevalent and ongoing problem.  Every day there are more and more defined diseases, and more and more treatments are coming out that can help.

One of the great things about the internet is that it is open 24 hours a day and 7 days a week.  Manhattan Research tells us that at least 10 million consumers regularly post health data and gain information online.

The technology being used is still evolving.  Doctors have collaborated for years, sharing case studies and symptoms. The following is one example from Michael Segan MD PhD:

“It is great to have support groups once a diagnosis is made, but it is crucial to find the diagnosis without going through years of a diagnostic odyssey. Our software helps people diagnose 1,832 neurological and metabolic syndromes – it runs from http://www.simulconsult.com.”

Conversion and Adherence

Now with the emergence of Health 2.0, patients are starting to become part of the mix.  There are also many community groups for individual diseases or collections of many such groups. Some examples are discussed in  “Health 2.0 for Neurologists”.

From that article:

“One concern about patient communities is that the information may not be correct or current. Neurologist Dan Hoch, MD, PhD, and colleagues explored this question using the epilepsy community of their BrainTalk forums and found that “a panel of three neurologists and a neurology nurse judged that 6% of the posted information contained factual inaccuracies.” In Health 2.0 communities, when incorrect information does appear, it is often corrected quickly, even if all participants are patients.”

Pharma companies can help by listening to these patient communities and coming up with search terms that help drive people to good information.

Dr. Google is always open, and now people who crave answers and support can find it online 24 hours a day, 7 days a week.

Each rare disorder community has its own unique needs, challenges, language and transition points.  By communicating with them in a familiar way and seeing the work through their eyes, you can ensure your message will resonate with one that is focused around key transition points along each patient’s individual journey and you will see a stronger, more relevant connection between both patients and professionals.  What are your thoughts on Health 2.0?  Please share your ideas in the section below.

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(Image courtesy of “thanks for the memories” 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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