As the U.S. population ages, effective policy must be driven by older adults’ real experiences, not assumptions. Too often, their voices are left out of decisions that affect them. The People Say changes that. By collecting key public data from priority populations and bringing together dedicated partners, The People Say centers older adults in the policymaking process and pushes for a society that truly works for them.
The SCAN Foundation has long believed that listening must come before policymaking, because the best way to improve older adults’ lives is to first understand their lived experiences. This commitment spans all of our policy priority areas: long-term services and supports reform, health and social care integration, the advancement of integrated care for people dually eligible for Medicare and Medicaid, and the expansion of Multisector Plans for Aging.
To more deeply operationalize our commitment, alongside the Public Policy Lab, we developed The People Say, an online research tool that features first-hand insights from older adults and caregivers on the issues most important to them, as well as feedback from experts on policies affecting older adults. Since its summer 2024 debut on Capitol Hill, The People Say has become a critical tool for helping policymakers and stakeholders better understand the complexities of aging in America.
The tool uncovers how older adults navigate daily life, healthcare, housing and financial security, and paints a human picture of how public policies and programs reverberate in the day-to-day experiences of older adults, offering insights that quantitative data alone can’t fully capture.
‘If you’re chronically ill, you lose a lot of services because you don’t feel like it, or you don’t understand it.’
For example, Yuen, an older adult managing high blood pressure, shared her experience:
“Speaking for myself, I inherited some bad genes from my family and have high blood pressure, so I need to take medication long-term. Even though my blood pressure medication is covered by my [Medicare] insurance, I still don’t think it’s cheap. It’s quite expensive. … But the problem is, what happens to someone who doesn’t have insurance at all? That would be truly miserable. If someone is sick and can’t access the medication they need to survive and live a colorful life, isn’t that the same as being dead? So, if [someone has Medicaid], isn’t that like having a gold medal that saves you from death?”
Yuen’s story isn’t just a personal reflection—it’s a window into the systemic challenges that many older adults face when it comes to accessing affordable healthcare. It’s also a powerful reminder of the life-saving nature of a program like Medicaid, upon which almost 9 million older adults depend for their health and long-term care.
At a time when Medicaid eligibility is being reevaluated and millions of older adults and people with disabilities risk losing access to the care they rely upon, amplifying the voices of those directly impacted proves even more crucial.
Another older adult, Rebecca, illustrated the real-world challenges of navigating complex service systems:
“If you don’t have an advocate, you can’t access services. And for every service, there’s an application. And if you’re chronically ill, you lose a lot of services because you don’t feel like it, or you don’t understand it. When I don’t feel good, I can’t understand anything, either. So, it’s just not a friendly situation, and it seems like it’s set up so you won’t bother with it, and so it’s not used.”
Prioritizing Lived Experiences When Designing Policy
Rebecca’s experience highlights a key policy challenge: programs that appear well-designed on paper often fail if they don’t account for how people actually navigate them. Many older adults face barriers preventing them from accessing services, resulting in underuse despite eligibility. Effective policy needs to address these real-world obstacles to ensure intended outcomes are achieved.
The People Say serves as a vital tool to bring these voices to the forefront, not just holding a mirror to aging in America, but acting as a true catalyst for change.
The People Say can be used by policymakers to prioritize lived experiences in the development of policies that affect older adults. It offers a wide range of insights—transcripts, recordings, photos and summaries—all thoughtfully tagged to help users quickly find stories that align with their priorities. In a crowded data landscape, it provides a clear, accessible way to hear directly from the people most affected by policy decisions.
And the value of this is already being seen.
More than 400 federal and state policymakers and staff, including individuals from both major political parties, have attended The People Say briefings. This engagement validates the premise that qualitative, human-centered research is indispensable in addressing the complexities of aging in America.
Local organizations can use insights from The People Say to better design services, advocate for funding, and create community-driven solutions that directly address the gaps in existing policies and resources.
Finally, public and private sectors can invest in tools that amplify older adults’ voices. Beyond funding, sustained engagement means integrating storytelling into systems, increasing awareness of its value, and fostering lasting cross-sector partnerships to ensure older adults influence the programs that affect them.
The People Say is a one-of-a-kind resource, but it’s also a framework for reshaping aging policy from the ground up. When we listen to the experiences of those who live the realities of aging, we can ensure policies protect and empower our growing population of older adults in more meaningful ways.
Ultimately, The SCAN Foundation’s vision is clear: every older adult deserves to age well in their homes and communities. Bringing that vision to life means listening to older adults and embedding their insights into the systems that shape their lives. Lived experience isn’t an afterthought—it’s critical for sound policymaking. Let’s make it the starting point.
Interested in co-funding or collaborating on the next round of The People Say? Reach out to Kali Peterson at kpeterson@thescanfoundation.org to learn how to take this work a step further.
Kali Peterson, MS, MPA, is director of Policy and Programs at The SCAN Foundation in Long Beach, Calif.
Photo credit: This photo is taken from The People Say, a public-interest platform to advance equitable policymaking with qualitative research, per that site’s terms of use.
