The Importance of an RA Online Community

  • Back in college, I thought that I had life planned.  Graduate with my music degree, get a job, get married, have three kids before I turned 30, live happily ever after....

     

    Well, I did graduate with that music degree, and then some.  I landed many a freelance playing gig and was working on getting firmly established in the DC music scene when disease started attacking my body.  It quickly followed that disease attacked my professional foundation and financial future.

     

    Life hardly ever goes as planned.

     

    After starting my blog, Brass and Ivory, over three years ago, I have witnessed the rise of patient blogging.  Patients connecting with other patients is not a new concept, just the landscape has evolved.  We are using the internet to connect in ways which go beyond the traditional support group or message board.  We use blogs, sites like MyRACentral, forums, Facebook, Twitter, and many more to connect.

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    We create community where there was none before.

     

    With connection and community come the power to help each other, encourage each other, educate, inspire, guide, support and empower each other.  At times, we provide what isn’t found at the doctor’s office, from friends or family, or from the healthcare companies who supply the products we need to live healthier lives.

     

    In a very real way, the patient has become a powerful force!! 

     

    Healthcare companies have always wanted to expand their consumer base, but that came primarily from working with doctors and insurance companies.  Now companies spend more time and money on advertising directly to patients (or potential patients) and have been doing this for some 30 years ago.

     

    The FDA divides direct-to-consumer advertising into 3 categories:

    • Reminder advertisements contain the name of a drug only and are designed to reinforce brand recognition;
    • Help-seeking advertisements contain information about a disease or condition without mentioning a particular treatment; unbranded campaigns or websites would fall under this category;
    • Product-claim advertisements feature a product’s name and therapeutic claim, including specific efficacy and safety information about the drug or product.  These advertisements, regulated by the FDA, require the “fair balance” presentation of the risks and benefits of a drug.

    When we think of pharmaceutical advertising, usually it is the third category which quickly comes to mind, perhaps television ads for drugs to treat impotence, insomnia, depression, high cholesterol, and even rheumatoid arthritis.  These ads are one-directional and not particularly engaging.

     

    How many times have you talked back at the TV about how the persons depicted in a commercial do not represent your experience with a disease?  Rather than being inspirational or educational, these advertisements become isolating and discouraging.

     

    We deserve better.  We expect more than simply learning about the existence of a product so that we might bug our doctors to prescribe it to us, whether it’s appropriate for our specific situation or not.  We need more than the “sell, sell, sell” strategy of traditional advertising.

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    We need true support and services from the companies whose products we use (or might use when needed).  And now, healthcare companies are finally recognizing and beginning to respect the needs of the various communities of patients which exist online and offline.

     

    Our collective voices are getting stronger and are no longer being ignored.

     

    My voice has gotten stronger over the years since disease has moved in.  I used to be a shy person who never spoke up or tried to draw attention to myself.  However, I was fairly comfortable when I had a musical instrument at my hands to speak for me.

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    Lately, I’ve not been performing music on stage as frequently, but I have been using my voice to speak to people who work in the pharmaceutical and/or marketing industries.  I’ve shared my experience interacting with pharma, online and offline over the years starting with lengthly struggles to gain affordable access to prescribed medication (ie. I was rejected many times for financial assistance).

     

    I’ve talked about patient blogging.  I’ve talked about our empowered community.  I’ve even traveled internationally to sit in a room with a few other patients and executives to discuss what our patient community REALLY needs in terms of support and services from companies.

     

    The discussion has gone beyond advertising and is focused on providing tangible value to the customer/patient.  The only way to have those needs be known is to voice them, individually or as a group.

     

    Distribution of real patient voices is a very good thing.

     

    Last year I was surprised when one company contacted me about a project to “inspire the MS community.”  What they actually wanted to do is help raise the patient voice to a new level and provide a platform for bloggers (real-life, long-term bloggers) to discuss aspects of their lives while living with disease (MS) on video and in word.  This is my interpretation; others may view it differently.

     

    Disclosure: I was hired to produce vlogs/blogs for HowIFightMS.com which is sponsored by EMD Serono, makers of Rebif and Cladribine.  I do not use nor endorse products made by this company.  This website is an example of an unbranded “help-seeking” type initiative or advertisement for the company.  Many unbranded projects continue to be offered in the area of multiple sclerosis.

     

    In the area of rheumatoid arthritis, we also have examples of unbranded projects which provide value to the patient in some way.  Examples which come to mind include: NewWayRA.com (a project to which Sara Nash contributed her story and expertise) or MyRAFitKit.com (a project which clearly acknowledges that our experiences with RA are unique and that “my RA is not your RA.”)

     

    I think that these types of initiatives slowly begin to address some aspects of our greater needs.  We get to know other patients who are like ourselves.  We gain access to tools which help us to live healthier lives.  We can benefit from these offerings whether we use the company’s product or not.

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    But we, as a community, must continue to speak up.  Voice our needs and concerns.  Make it easy for companies to identify and sponsor services and support which address our needs online and offline.

     

    Let’s keep talking, and not wait until companies figure out how best to “engage” with us or to join our conversations.

     

    My life may not have unfolded as I had planned so many years ago.  But now, disease has indirectly created an opportunity.  An opportunity to talk to executives and encourage them to think beyond their company or brand... to view the customer (or patient) as an individual who has unique needs.

     

    I’ll be speaking at another conference on Thursday.  Our panel will seek to answer three questions as we speak to pharma executives.

    • What rules of the road should companies follow when they engage your communities online?
    • What health or pharma company social media efforts are resonating with your community online? (be specific)
    • What else should health and pharma companies do to support your communities online?

    I’ve already provided some quick answers to these questions to our panel moderator.  But I’d like to know...

     

    What would be YOUR answers to the questions above?

    It's not too late to have YOUR VOICE represented to the audience.

     

    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: November 08, 2010