Patient Advocacy Coffee Chat: Basic Steps to Being a Good Advocate
“What does good advocacy look like? Why do we advocate? And what are some tips and tricks for effective advocacy?” asked Karin Hoelzer, Senior Director of Patient Advocacy at the Biotechnology Innovation Organization (BIO).
Her questions kicked off BIO’s October Coffee Chat, Advocacy in Action, which welcomed patient advocates from across the healthcare community. While BIO’s Coffee Chats are a monthly occurrence, this month’s chat buttressed BIO’s Patient Advocacy Changemakers Event (PACE), which took place on October 22 and 23 in Washington, DC.
The event brought together patient advocates from across the country and across therapeutic areas, providing a forum to share insights, exchange information, and make new connections in the pursuit of better access to and affordability of therapies for patients.
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“Advocacy is an opportunity we have in our country we all need to take advantage of and help folks develop those skills not only in our own community but in other communities because it really does matter,” said Jenny Luray, Senior Vice President of Strategy and Public Engagement, Research!America, “So many Americans think that they don’t have as much power as they do.”
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Luray echoed her position, saying: “I’d like to see more patient advocacy groups in districts because that’s where you’re most likely to get more of the members’ attention. Forming events with a local healthcare provider, the Lions Club or women’s organizations, whatever works in terms of your disease area, creating those opportunities, all of it is really important. When that member meets you on the ground, they don’t forget it.”
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“When I was on the Hill, the advocates that I relied on were those that always came in with a lot of information,” Luray recalled. “I never felt they were like gaslighting me, and they were willing to answer questions and be a resource on things that might not be on their top list, but they were able to be helpful.”
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“It’s keeping advocates really informed and giving them information along the way so they’re learning as time goes on, and developing expertise,” Luray said. “I think it’s very satisfying to people as they get more experienced and comfortable with advocacy than they were maybe three years ago. But it’s a constant effort. You constantly have to be in touch with people.”
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