The focus group, which will be held live at the conference, is supposed to have three real patients, who will help industry attendees "reach, engage, educate, and retain patients. Patients across three therapeutic areas gather to share their stories from diagnosis, to research of the disease, to how they communicated with their physician and ultimately chose their treatment."
But Trisha Torrey, a former marketing consultant who bills herself as Every Patient's Advocate in hopes of helping others navigate the healthcare system, relates that everyone who responds sees the industry through a prism of experience with a particular drug, good or bad. And if that experience was somehow unpleasant, well, forget it.
"Getting people to complain isn't difficult," she sighs. "I believe invitations were seen by nearly 2,000 people, mostly by people who have signed up for my blog. And, in the e-mails I received, people are taking out their virtual baseball bats and swinging them at the industry. There were a lot of beefs to share. Unfortunately, I"m not finding any positives whatsoever. And I'm finding that's translating into a trust issue."
And the anger, she tells Pharmalot, often extends to doctors and pharmacists, too. So she's redoubling her efforts and casting a wider net, because she would like to have a cross-section of opinions that would help the attendees. "No one likes to hear negative information," Torrey points out, "but we all know that sometimes such information can be the most helpful. I'll find who I need, but I just want don't want the people attending this conference to feel like they were bashed. There should be something useful."