Patient advocacy influential in drug development, says panel

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Patient advocacy groups are an increasingly valuable resource for pharma manufacturers and FDA throughout the drug development process, since they provide, among other things, a crucial perspective, according to a New York Pharma Forum (NYPF) panel last week.

Panelist James Valentine, a program analyst at FDA's Office of Special Health Issues, said patient advocates serve not only as speakers at FDA's public meetings and workshops, but that they “ultimately add legitimacy and value to the process of medical product development,” according to slides provided to MM&M by the NYPF.

Genentech's associate director of advocacy relations, Kristin Reed, also a panelist in the discussion, said in a statement that Genentech has learned to communicate with patient advocacy groups, even if company objectives don't always align with patient insights. “Sharing information and hearing their viewpoints on important decisions builds long-term relationships,” Reed said in the statement. “We never underestimate these groups – they are extremely well-informed and sophisticated.” Reed did not immediately respond to a request for comment, and slides from her presentation were not available.

Terri Cooper, principle and leader, national R&D life sciences practice at Deloitte Consulting, said patient advocacy groups can help resolve patients' medical bills, support orphan diseases and raise money and awareness to jumpstart research, create networks to expedite clinical trial participation and reduce costs, as well as lobby for formulary access, according to the slides.

The panel, titled "The Influence of Patient Groups on Drug Development," was convened as part of the NYPF's 21st annual general assembly, on December 3 in New York. The NYPF is a nonprofit intended to encourage dialogue among US, Japanese, and other international biopharma execs on global issues of common interest, according to a statement.

Many pharmaceutical companies partnered with patient advocacy groups for educational campaigns in 2010, and an Epsilon survey showed that third parties – like non-profits and government – lend credibility to health information online, especially where pharma is involved.

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