I’ve got Ankylosing Spondylitis (AS), a chronic disease that causes inflammation of the joints. Sometimes it hurts like hell, yes, but here a few other things to my disease apart from pain:
• I don’t personally know anyone else who has AS
• I get a whole lot of symptoms but no one I read about on forums seems to have the same combination of symptoms as me
• I need to maintain a positive attitude and accept AS as a part of my life
• I worry that people think I am faking my disease so that I can get out of stuff
• And lots, lots more…
So what’s my point here? This blog isn’t a place for disease sufferers to air their thoughts. My point is that these are my insights about my disease. They are patient insights – small nuggets of reality for a patient that are not necessarily common knowledge to non-patients.
Consumer packaged goods marketers spend millions researching consumer insights and focus on these in virtually everything they do: online activities, advertising, packaging, product development, in store etc. But in the pharmaceutical industry this often doesn’t seem to be the case. For example, many disease awareness websites offer a medical overview of a disease but don’t contain much in the way of insights. You may get a patient story with an insight or two (this is a good start) but often you don’t even get these. I wonder sometimes how often real patients have been involved in the development of these sites.
I think pharma and healthcare is missing a trick. Well researched patient insights would make for much more relevant, engaging and useful disease awareness sites. What’s more, the patient insights are out there for the taking. The disease forums are full of them.
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