There is an ongoing debate (at least in the blogosphere) about what to call those interested in managing their health: patients or consumers. I tend to fall in the 'patients' camp, but don't have a strong feeling either way. The bigger story to me is that no matter what label you use, there is this new world that includes activated patients. The term stems from a study released last year from the Center for Studying Health System Change called, How Engaged Are Consumers in Their Health and Health Care, and Why Does It Matter. The researchers created a Patient Activation Measure (PAM) to evaluate an individual's ability and desire to take care of his/her health. In the U.S. about 41% of adults are considered activated by PAM. I spoke to one such patient for an article I was writing. Lisa Emrich is a musician who lives with multiple sclerosis and rheumatoid arthritis. She started the blog Brass and Ivory to discuss health policy and Big Pharma as it relates to her world of MS. She also launched the Carnival of MS Bloggers to publish the thoughts and experiences of the multiple sclerosis community.
In corresponding with Lisa, it became apparent to me that trust is the glue that holds the patient community together. As Lisa shared with me, "Patients share so much personal information with each other online that trust and transparency is paramount. I believe patients trust me in part because I provide them with information that goes beyond the short press release and digs into previous studies and related information. And I try to do so in a manner which is easily understandable to someone who doesn't have time to read up on the topic."
I was curious what Lisa thought about pharma companies and whether she or her readers would like to have a relationship with them. While she/they might, the big thing missing is trust and mutual respect. Listen to what she said:
I've received emails from the communications department of isolated pharma companies who are developing MS treatments. But the purpose is often just to distribute a press release and not actually to develop a mutual relationship. The one company who did move to establish an ongoing relationship dropped me like a hot potato once the CEO had picked my brain and after I had posted six pieces surrounding the topic of their pre-launch stage product. The pharmaceutical companies who market the drugs have a poor reputation. Perhaps this is due to a general lack of understanding and respect for their target audience - the patients. Talk with us. Not at us. Engage with participants in social communities. Patients will not bite. Engagement means participation, and in social networking, participation means communication. Stop lurking and jump in!!