Pharma needs some 'marriage counseling' for patient relationships: Report

inVentiv's Heather Gartman

Patient advocacy groups want information and candor from pharma companies--and they fear they're not getting it, according to a new study from inVentiv Health Public Relations Group. The earlier the better, too.

"The relationship between advocacy groups and pharma is working, but it needs some marriage counseling maybe, because there are some cracks in the relationship," said Heather Gartman, managing director and one of the study's authors. "In the end, they both need each other."

InVentiv undertook the study, which it plans to make an annual audit, in an effort to make sense of the shifting landscape in the healthcare industry, particularly in light of the Affordable Care Act. This spring, they interviewed more than 40 groups--mostly focused on oncology, rare diseases, Parkinson's disease and mental health--to find out what's working and what's not.

What surprised Gartman most was that advocacy groups complained that pharma companies still don't get in touch with them early enough in the drug development process. "I thought that had changed," she said.

Not enough, anyway. One commenter echoed others' sentiments by saying, "Industry needs to involve patients more in the beginning conversations with researchers--in all aspects of clinical trials, not just the end and the testing."

Patient groups want drugmakers to recognize their expertise and value the help they can offer. They want in on the ground floor, Gartman said. That said, the advocates admitted they could do a better job partnering with pharma by acting more like businesses, reaching out proactively and keeping promises and commitments.

Social media, while seen as a positive advance for communications, can create a false sense of closeness between pharma and patients, the advocacy groups said. Even though pharma can "listen in" to patient groups and monitor comments, it's no substitute for direct contact with patients, they said.

Another finding was a need for drugmakers to take on the tough talks. Advocacy groups want companies whose drugs are going off patent be up front about support programs that may be ending or other changes coming as the company backs off of marketing the brand--and well in advance. "What they're saying is give us more of a heads up and be open about it," Gartman said. "… It's all really about improving the transparency and authenticity of the relationship."

- see the InVentiv study (reg. req.)

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