Patient Voices in the Multiple Sclerosis Community

  • Last November we had a lively discussion regarding FDA, Social Media, and Pharmaceutical Advertising. The consensus seemed to be that we are tired of seeing pharma ads plastered all over TV, newspapers, magazines, etc., with the “ask your doctor if xxxxxx is right for you” message.

    Companies are wisening-up and realizing that a good way to support patients (who may or may not become customers) is to offer services which are useful or helpful in some way.  But what services would truly be unique and helpful?

    Disclosure: The recent trip I took to Switzerland was paid for by a company who asked me to participate on an “MS Social Media Advisory Panel.”  In one short day, we (the patients who lead communities online) didn’t do much advising at all.  We only barely scratched the surface in explaining what we each do online, how MS affects our lives, and how our online activities benefit us personally and the members of our respective communities.

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    Since the panel didn’t get into any deep brainstorming, and there were only five of us representing the more than 2.5 million people worldwide who live with MS, I’d like to turn the mic over to you.  Let’s do some brainstorming of our own.  Anyone can contribute, and companies or organizations who are listening can learn from more real patients.

    Dream Big!!  What would be a program or service offered to ALL multiple sclerosis patients (regardless of drug choice) online which you would design and might even use?  Of course, obvious platforms online such as forums, message boards, websites, etc could be possibilities.  But we already have many of those.

    Think even BIGGER.  Would you want access to medical personnel online?  How could MS nurses respond to your needs beyond those of teaching you injection techniques?  Could physical therapists present the type of information you might get at an in-person meeting through a webcast or webforum?  How could the stories of real MS patients be presented and shared in a genuine way?  Would you want lifestyle tips and suggestions, recipes, or other advice coming from a pharma company?

    What do you think?  Do you have any grand ideas?  Our patient voice is getting stronger and stronger and the MS community is getting harder to be ignored.  Some companies and organizations are actually beginning to listen to patient needs and wants.  For months I’ve been asking myself and others repeatedly....what do we as patients want?

              Let me ask you.  What would you want?  Dream Big!!!

     

    Lisa Emrich is author of the blog Brass and Ivory: Life with MS and RA and founder of the Carnival of MS Bloggers.

Published On: May 17, 2010