Raising awareness online- why pharma can learn from patients

Written by Silja on 1 March 2009 in epatients - 139 Comments

Most pharma online campaigns focus on raising awareness about a disease and/or a treatment (depending on the legal constraints in each country). Yet, at least for me, they usually fail to raise the emotion and urgency required to drive me to action (ie. sign up for screening, go see my doctor etc.). To be fair, it is difficult for pharma to achieve this. Lots of questions in the back of people’s head make it difficult for the message to go through: Are they saying this only to sell their product? Are they exagerating? What are the chances of this ever going to happen to me?

Raising awareness is also one of the main reasons patients become active online and with the rise of social media, they are now so amazingly good at it that pharma compaigns can often not compete. To illustrate my point, I will compare a powerful patient blog to two pharma sponsored sites in cystic fibrosis.

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Nate Lawrenson’s blog, “Confessions of a CF husband“, first caught my eye a year ago, when I saw it nominated for Blogger’s Choice Awards. In his blog, Nate tells the story of his life with his wife Tricia, a cystic fibrosis patient, and their miracle baby Gwyneth. I read his amazing story and I cried (and I am usually not the “crying“ type, I am German, if you see what I mean .  The generosity, energy and authenticity with which Nate tells his story make this blog one of the most powerful disease testimonies I know of . It also has become an amazing tools for raising awareness about CF (as well as organ donation, premature babies and Lymphona). Since Nate started to write his blog, it has received 9.3 million visits from across the world.

Nate does incredible things to raise funds and awareness for the causes he supports, like shaving his head live on facebook. He is also very active on twitter and you tube. I read his blog a good two-three times a week, just to check that Nate, Tricia, and Gwyneth are doing ok. Contrary to the pharma sponsored campaigns, Nate’s blog drives me to action: I finally got my organ donor card for example (something, I always had wanted to do, but never got around to before.) It creates an emotional bond to a disease, I knew little about prior to reading his story.

Ok, so what does Nate have to do with pharma’s efforts to raise disease awareness? In the two graphs below, I compared the CFhusband blog to two pharma sponsored CF awareness sites using Alexa’s daily reach: Genentech’s heroes of hope and Novartis CF voice (on the left).

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As you can see, only CF husband shows up on the graph. I thus redid the analysis and compared the main website for Novartis and Genentech with CF husband (graph on the right).  Nate’s blog gets pretty close to novartis.com, while genetech.com is not showing up.

Just to make sure, that this is not a “CF only“ phenomena, I did a similar analysis for diabetes, comparing dlife (one of the major diabetes online communities), diabetesmine (one of the main diabetes patient blogs) and goinsulin, a very intelligent and well done diabetes awareness site sponsored by Sanofi Aventis.

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Again, the pharma- sponsored initiative comes out low on daily reach, compared to the main sites of the strong and active diabetes online community. (I would have loved to add the goinsulin you tube channel to this comparison, but Alexa would not let me :-( )

Finally,  the point of this analysis is not to criticize pharma-sponsored awareness campaigns, but to show that putting up a website (however much you invest in it) is not enough anymore, if your goal is to reach a maximum amount of people in your target audience online.

With the rise of social media, patients have found themselves “online homes”: communities or blogs that they are loyal to and emotionally engage with. If pharma’s goal is to raise awareness, they have to reach patients in their “online homes“. After all, it does not make sense to  set up a huge screen in the desert, if you can reach people in front of their TV, no? Pharma has to  get to know the online patient community, identify the most influential sites and understand what they are interested in. They have to reach out and collaborate with patients “online homes“, if they want their online campaign to result in action.

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