In 2003, after giving birth to her third child, 37-year-old Amy Tenderich was diagnosed with Type 1 diabetes. After doing what any reasonable person probably would do—spending a day crying on the couch—she began a quest to learn all she could about her disease and how to live with it.
She was among the first patient bloggers on the Internet (www.diabetesmine.com) and has built an amazing following of tens of thousands of fellow patients living with diabetes. But what strikes me with the intensity of a clarion bell is what she says is her most important lesson: "I learned all sorts of facts about my own health that doctors never told me."
Patients are so deeply in need of information and support that they've created a thriving and growing underground society using new online tools to find out things their own doctors never tell them.
Make no mistake, this is no emerging trend—it has already fully emerged. More than one out of three Americans use some form of healthcare–elated social media each year, such as chats; message boards; user-generated communities, including Patients Like Me; Wikis; and video-sharing sites.
What are they looking for? Emotional support, for one. Being sick can be isolating, and, like Tenderich's experience, being presumably healthy one day and a patient the next can be shocking. But the primary reason people turn to social media is to manage their conditions. They want to see what other patients like them say about a medication or treatment, and nearly two-thirds of them say they believe what they read. They're using social media to make major decisions about the drugs and treatments that pharmaceutical marketers offer.
As a marketing professional in the healthcare industry, I can't help but feel we are missing a golden opportunity to meet these sometimes-desperate needs of patients, to become more relevant and supportive in the long arc of their journey to better health. If we do, we'll win their respect and loyalty, their adherence and behaviors will change to improve their overall health, and the financial bottom lines of healthcare brands will strengthen. Everybody wins.
There's no tried-and-true model for how we engage with patients in the social-media sphere. And barriers in the pharmaceutical industry are plenty: Any user-generated content that appears on a pharmaceutical company's website must be reviewed by internal medical, legal, and regulatory teams to ensure it complies with FDA regulations before it goes live, and analysts are still grappling with how to calculate return on investment in social marketing.
Yet the longer we wait to wade in and figure it out, the greater the potential downside. It's time to act now, before our voice is permanently dwarfed by the flood of patients who dispense advice and opinions on the Internet.
To help break any paralysis you may feel, here are three steps that will ensure you aren't left behind in the social-media sphere.
1. Listen
The first step is to know what your brand's patients are doing. Imagine you've just been diagnosed with a common disease. See what the most reputable websites have to say about it. Then dive into user-generated content whenever you see a thread that leads there. If you haven’t done so before, you will be amazed at what is seething below the surface.
