It’s been awhile since I last blogged, and even longer since I attended the Medical Marketing & Media workshop on patient engagement. While many of my memories of the workshop have faded, there was a powerful moment during the panel discussion that has stuck with me, and which I keep coming back to.

The panel discussion — “What’s the true meaning of patient-centricity and is anybody doing it?” — was moderated by Jack Barrette, the CEO of WEGO Health, who announced, “A revolution is underway!” He cited research characterizing patients as “the most underutilized resource,” a constituency that has “the most at stake.” Patients “want to be involved and can be involved,” Barrette remarked. “Their participation will lead to better medical outcomes at lower costs.” To underscore his point, he quoted a 2012 article by Leonard Kish (available at, who pronounced, “If patient engagement were a drug, it would be the blockbuster drug of the century and malpractice not to use it.”

All well and good. The panelists were asked to provide their perspectives on patient-centricity, and some interesting discussion followed. Marisa Troy, an inflammatory bowel disease health activist and creator of the blog, Keeping Things Inside is Bad for My Health, characterized “good” patient-centricity as that which occurs when a pharma company considers everything it does in light of how it impacts a patient and his or her family, whereas “bad” patient-centricity is when companies advertise on TV and online, a practice that may be “PC,” in current parlance, but which “prey[s] on vulnerable people who have no choice but to be at the mercy of doctors and hospitals.” The requirement of drug ads to list “70 million deadly side effects scares the living crap out of people,” Troy commented.

This discussion is starting to heat up, I thought, as a couple of industry representatives acknowledged that pharma companies can serve patients better but are nevertheless doing their best. The industry reps seemed sincere, and didn’t rebut the patient panelists. But I wasn’t blown away yet.

And then we heard from Christine Miserandino, a lupus and chronic illness activist, author of The Spoon Theory,and creator of the site, But You Don’t Look Sick. “I’m a patient!,” she exclaimed. “You’ve been talking about me all morning!” Miserandino described her lifelong struggle with lupus and her recent recovery from a stroke, during which she was given a pamphlet about “What to Expect When You’ve Had a Stroke.” “I could not feel the left side of my body,” Miserandino related. “I could not speak. Yet my family and I received this little pamphlet. So I guess what ‘patient-centric’ means to me is ‘welcome to my world… You’re coming into my world, not the other way around.’ Once you understand that and that we’re partners in this — I’m not the ‘consumer’; I’m not the ‘end result’ — then I think we’re at the table together.”

Miserandino wasn’t done. She described how she was invited to consult with a pharma company on how to communicate with patients about the company’s new treatment for rheumatoid arthritis (RA). “They started talking about the drug and the side effects and three months out this and six months out that,” she related. “Finally I just jumped into the conversation. ‘Have you guys gone on YouTube at all?’ No, none of them had. ‘Well, I can’t open your bottle. I have RA. None of us can open your bottle.'” She told the pharma company executives about the video she had posted on YouTube, in which she took a chainsaw to their drug’s bottle, because she couldn’t open it with her hands. The video, she said, was extremely popular. “The room went silent. I said that none of their graphs really mattered to me if I couldn’t open the bottle, and that’s why I’d been taking the generic. They were like, ‘Okay.'”

Six months later, I’m still blown away by Miserandino’s comments. I’m often asked to help pharma and biotech clients with their corporate messaging. Every single one of them asserts that they are “all about the patient,” that serving patients’ needs is the core principle of their business. Yet some of them are merely paying lip service to patient-centricity. While there’s nothing wrong with making a profit, these companies’ obsession with profits seems to have made patient-centricity an afterthought. Fortunately, an increasing number of companies seem to see the light. More and more, when working with my agency clients to develop communications plans for pharma and biotech companies, I’m told that the companies are especially interested in strengthening ties with patient groups and advocacy organizations, and in providing these groups with resources that are meaningful and valuable. I hope this is a trend that sticks. Otherwise, we may see more provocative YouTube videos involving “bad” medicinal products.

Happy holidays to all!