Here are more things we learned during last week’s summit.
1. ‘CMS wants data.’
How can patient advocates (and industry) best work with Centers for Medicare and Medicaid Services (CMS)?
“CMS wants data—DATA, DATA, DATA!” said Jennifer Young, Partner at Tarplin, Downs & Young LLC, during a panel on working with CMS post-Inflation Reduction Act. “How do you translate qualitative patient journey stories into that kind of data input?”
The CMS has people who are brilliantly smart when it comes to very specific areas, for example, hospital systems, Physician Quality Metrics, and the like,” she explained. “However, they have less understanding around things like the research pipeline. It is places like those that we can come in and advocate most effectively.”
2. We should expect more anti-vaccine legislation.
“What we’ve seen across the states over the past year-and-a-half to two years is an increase in anti-vaccine legislation filed in state legislatures,” said Rekha Lakshmanan, Chief Strategy Officer of The Immunization Partnership.
“In 2022, we saw over 1,300 vaccine-related bills filed across state legislatures. It was in response to some of the federal mandates that came down, but what we are starting to see is kind of a breach that really attempts to erode or to dismantle routine vaccine policies in the states.”
And there’s more to come, said Lakshmanan—read more.
3. ‘You can’t just show up when you need to conclude your clinical trial.’
In one of the highlights of the two days, patient advocates discussed how to engage with communities and build trust—and it starts with showing up.
We have to meet people where they are, said Dr. Lisa Fitzpatrick, Founder and CEO of Grapevine Health, which creates relatable health content to build health literacy. “What if the health system—all of you, all of us—found ways to be in the places where people are paying attention? Because we’re not there.”
“Everything you do is an opportunity to build trust, but it’s also an opportunity to lose that trust,” said Jason Resendez, President and CEO of the National Alliance for Caregiving. “Trust is how you design a study protocol, how you translate or don’t translate a flier, how to go about translating that flier,” as well as acknowledging systemic injustices.
“It’s about staying in a community,” added Tonya Winders, CEO of the Allergy & Asthma Network, “and also addressing some of the systemic injustices. We can’t really talk about health inequity without also talking about education, economic policy, transportation, housing policy.”
“Which is why you can’t just show up when you need to conclude your clinical trial,” remarked moderator Mary Stutts, Global Chief Inclusion and Health Equity Officer at Real Chemistry.
Catch up on the summit coverage exclusively at Bio.News.