Bioverativ taps patient social network for input on hemophilia trial design

What if companies knew patients’ top treatment priorities before clinical trials started—and could factor those unmet needs into study designs? Bioverativ is about to find out.

While designing a now-ongoing trial for a new hemophilia drug, the Biogen spinoff tapped patient social network creator MyHealthTeams to help find out what ailed hemophilia patients after their bleeding was controlled. The hypothesis was that marketers could eventually talk up those very benefits down the line.

The findings? Fifty-six percent of respondents—all from MyHealthTeams’ MyHemophiliaTeam network—reported ongoing pain, and, given that pain, 65% said they needed help with depression. And Bioverativ, in turn, designed its trial to address those unmet needs by gauging pain in addition to bleeding.

Bioverativ first partnered with MyHealthTeams a couple of years back, intent on making sure the studies the company pursued "actually matter" to patients with the disease, MyHealthTeams cofounder Eric Peacock said in an interview.

In the process, the company picked up some potential endpoints that could matter to regulators and payers, too, he noted. If Bioverativ were to include pain in a trial and come up successful, "that means their FDA-approved label could have and speak to issues of pain, and there’s no other drug in the market that does that," Peacock said.

"It really differentiates their drug by addressing the No. 1 complaint of all these patients, and unless it’s in a trial, you can’t talk about it," he added.

Payers, too, are looking to prioritize meds that can help improve outcomes, and especially with pain—which is a "huge epidemic-like problem for the U.S. and many other developed countries," Peacock said. "[U]nderstanding pain outcomes and whether or not they’re addressed by a drug is critical for those payers."

Incorporating the new research into trial design, meanwhile, aligns with the "patient-centric" corporate image Bioverativ’s execs said they wanted to take with them from Biogen. "Biogen has, I think, a terrific corporate brand that is about putting the patient first, and it's about innovation, and we’ll carry that forward absolutely," Bioverativ CEO John Cox said in a January interview.