When you think about marketing, you think about selling a product. Most of the time, this product is something that is desirable. Perhaps the new Apple iPad or a fast car or the latest It bag. These things are cool, they’re hot, they get people talking.

But nobody really likes medicine. No one chooses to get sick and require medication, whether it’s for one week or the rest of their life. No one sees a commercial for the latest FDA approved drug and think, “Man I wish I could get my hands on that!” Patients are unwilling customers. They purchase products they have no desire to have using money they have no desire to give away.

Medicine is necessary. Products created and provided to us by pharmaceutical companies are necessary. There is no question about that. When I was diagnosed with type 1 diabetes at 8-years-old, I had very little understanding of how pharmaceutical companies would play a role in my life. As a child with diabetes, my world was still wrapped up in things like Girl Scout meetings, family vacations, and sleepovers. I spent much more time worrying about whether or not the girl with the nicer clothes liked me. My health was important to me, but it was handled by the superior knowledge and understanding of my parents.

That wouldn’t last forever, though.

Although I literally grew up on the Internet (I created my first AOL screen name when I was 11 years old), I didn’t discover true social networking until I was a senior in high school. Although I was familiar with Instant Messaging with my schoolmates and using the Internet to research homework assignments, my contact with people that I didn’t know was limited. As the Internet grew more interactive, so did the ability to connect with people outside of my little community.

It may feel to some like it happened slowly over time, but for me it feels like a rapid progression. One minute, I am the only person with diabetes that I talk to on a daily basis and the next day, I have at least fifteen people who I share stories with on a chatroom that I eventually went to work for when I was 17. From there came forums, chatrooms, blogs, Facebook, Twitter, and patient-created social networks like TuDiabetes. Now I barely go an hour without hearing about a person with diabetes (PWD) sharing a struggle that I am also having or receiving countless messages of support and comfort.

Whereas before, I was limited to the information my doctor or diabetes educator could provide me about new medications or medical devices. Sometimes I would hear about someone who tried the latest It device, but it was usually a “friend of a friend” situation. With social networks, I had direct access. No matter what I wanted to know, I could find someone who had been there. The other PWDs in my social network became my new sales reps.

A few weeks ago, someone tweeted about why the diabetes community seemed to be so strong in social networking. Personally, I think there are a few contributing factors. First is time. People with diabetes have been using the Internet to communicate for as long as the Internet supported the function. Second, I think that certain diseases or conditions so strongly affect a person’s day-to-day physical and mental faculties that it is only natural that we would reach out to others. A disease like diabetes is like an anchor on the mind, dragging it down again and again, with only our own strength to keep it from completely stopping us in our tracks. With social networks, we work together, as a team, to help those who are particularly struggling to keep themselves afloat.

Lastly, diabetes is unlike most diseases in which the primary decision maker of treatment is not the doctor. Of course, a person with diabetes is surrounded by a team: an endocrinologist, a diabetes educator, a nutritionist, an ophthalmologist, perhaps even a podiatrist or countless other specialists. But after the education has been done, and the patient goes home, there are often months before the patient returns to the doctor. Thus, the day-to-day care involves juggling a dozen factors over which we only have control over a couple. Diabetes is a mysterious disease, and one that often can only be understood through experience, which means we often rely on others who have slowly uncovered its mysteries.

The medication and devices we use can also be best explained by the people who use them. It’s really no different than going to Yelp to get a restaurant recommendation from someone who has actually eaten the food. Doctors and sales reps might know how the medication should work, and sometimes we even encounter sales reps with the same disease, but even then, there’s only so much they can say. That’s where patients come in.

I have always believed in a holistic relationship in healthcare. Patients need to listen to their doctors, doctors need to listen to their patients, pharmaceutical and biotech companies need to listen to patients and doctors. We are all pieces to the puzzle of healthcare and our knowledge and experiences are extraordinarily valuable. No patient wants your product, but they do want it to work. There is no shortage of patient experiences online, and while I sympathize to the challenges of adhering to FDA regulations (I too work in healthcare communications), there is no question that if you want to understand what your patient is going through, all you need is Google.

Allison Blass
Blogger
Lemonade Life