As people age, they often face increasingly complex health and social challenges. To support these needs, it’s critical for health systems, health and/or social service program leaders, and policymakers to engage directly with the aging populations they serve to better understand their strengths and challenges. Community engagement can help inform more effective policies and programs that reflect the lived experiences of those most affected. But for many state and local leaders, building those connections can be difficult.
The People Say is an online database that amplifies the voices of older adults nationwide, sharing firsthand insights on the issues that matter most to them. Designed to bridge the connection between aging community members and those serving their health and social needs, the website is a valuable resource for policymakers, health and social service providers, and advocates. To learn about the resource, the Better Care Playbook spoke with Petey Routzahn and Giselly Mejia of the Public Policy Lab, who led the design, research, and implementation of the database. They shared how stakeholders can use the online tool — and the impact of making its rich, qualitative data widely accessible.
Q: Can you tell us about The People Say initiative?
Routzahn: The People Say is a qualitative research database with over 100 hours of interviews capturing what matters most to older adults in regards to aging and accessing health care services. It’s a collaboration between two organizations: The SCAN Foundation, which works to improve aging — especially for older adults in rural, low-income, and communities of color — and the Public Policy Lab (PPL), a research and design lab where Giselly and I work. The People Say aims to bridge the gap between policy decisions and the real needs of older adults, which are often overlooked. We built the platform to make this research publicly accessible so that it can be easily used by a range of stakeholders. When we started, we had data from 66 older adults across seven states. This fall, it will be expanded to 130 participants from 15 states.
Q: How did you partner with community-based organizations (CBOs) to shape the research approach?
Mejia: We couldn't do it without them. We typically connect with trusted CBOs through word of mouth from our networks. These CBOs — such as senior centers, LGBTQ+ centers, churches, and, in one case, a Native Elders Council in Arizona — help us connect with older adults. Their existing relationships with the community are crucial, especially since many older adults are cautious about unknown callers or potential scams. CBOs often assist us with recruitment and sometimes provide transportation and food for the older adults and even let us use their offices to conduct interviews.
Q: What strategies did your team use to ensure that older adult participants felt supported and safe to share their experiences?
Mejia: We use several strategies and are always working to improve them. First is being very clear about consent. By the time we meet participants to film, we’ve usually spoken with them twice and aim to make sure they understand what the research involves, how their data will be used, and that the interview is optional. We also explain our data privacy practices, ask participants to avoid using names in our conversation, and redact any that are mentioned. If a caregiver is needed, they’re welcome to stay for the interview. We offer participants choices about how they appear in the final product, including cutting any pieces from the interview they’re uncomfortable with. Additionally, they can choose to have their face blurred, be filmed from the neck down, or opt for audio-only. We pay them upfront, so they’re free to skip questions or stop at any time. Using a trauma-informed approach, we check in regularly and remind them participation is voluntary. If they later want their data removed, they can contact us anytime.
Q: How can health systems and state policymakers use the stories on the database?
Mejia: Federal, state, and local government, and program leaders can use the platform to understand how people interact with services like Medicare, Medicaid, Social Security, and veterans’ services, and identify areas for improvement. We also have interviews with Native elders, which offer data about Indian Health Services. Many of our participants talk about their experience with other social services, like food stamps, housing vouchers, and transportation to health care appointments. The database has filters for many of these topics mentioned, filters by demographics, and you can also conduct a keyword search.
Additionally, researchers and advocates, including universities and NGOs, have used the data to advocate for older adults. And lastly, everyone can use this — these stories are life-changing. It has already changed all the research teams’ lives and perspectives. We’re all thinking more about older adults, our families, and our own aging.
Q: Can you share a story that highlights the tangible benefits of the database?
Routzahn: One great example is a policy think tank using our Insight pages, which are synthesized content and associated video collections on common themes to inform policy and program recommendations. The pages match areas of existing momentum with what older adults shared in interviews to highlight where policy efforts can focus. Another example is a small project around Medicare Advantage supplemental benefit cards. While older adults appreciate the extra support with these benefits, some people feel that they are not covering their actual health care needs. We searched our database for mentions of these cards, identified relevant participants, and conducted follow-up interviews to better understand the cards’ usefulness, the gaps they fill, and what improvements are needed.
People are watching our videos and inviting us to talk to their constituents. After presenting at the National Association of Medicaid Directors last fall, someone from the Wyoming Department of Health reached out about a project regarding Medicaid waivers. In a few weeks, we’ll be in Wyoming interviewing nine older adults about aging and how these waivers affect their lives.
We’ve also seen older adults invited to speak at conferences, panels, and podcasts. An unexpected outcome has been how meaningful this work is to participants. In our research, we’ve seen that a sense of purpose often diminishes over time as people retire, their roles in the family shift, and there are fewer reasons to be out and about in the world. But participating in this project has given many of them a renewed sense of purpose and pride. We’ve also built close relationships with some of them — they text us and even send holiday cards.
Q: What’s the vision for continuing to bridge the gap between lived experiences and policymaking?
Routzahn: We’re focused on expanding The People Say to include more states and populations. People find it helpful to see their constituents represented, so the broader the reach, the more useful it becomes for policy. We also want to organize data around current events. For example, after recent talks on Medicaid cuts, we shared videos of older adults explaining what Medicaid means to them, targeting states where the issue is most pressing and sending those clips to senators and representatives.
Longer term, we envision a network of databases across populations. The People Say centers on older adults, but we imagine versions for new moms or veterans, using the same tech stack, process, and infrastructure. Eventually, someone exploring housing insecurity will be able to see the same issue from perspectives across multiple populations.
Q: What advice would you give to others interested in collecting, analyzing, and sharing the lived experiences of different populations to drive policy discussions on social and health issues?
Routzahn: It’s critical to meet people where they are and recognize them as the experts. We often work with underrepresented groups and building trust takes time — not everyone is willing or equipped to do that. We really try to go the extra mile to make people feel safe and comfortable. For example, in upcoming interviews in a very rural area, we’re coordinating transportation so participants don’t have to be burdened with that.
It's also helpful to connect with trusted organizations where older adults already gather. Our work with a Native American Elders Council was supported by us joining their aging summit, building relationships, and later following up with elders for interviews.
Mejia: Using plain language is also important because it supports accessibility and being able to participate fully. We also practice deep listening and remain flexible during interviews. If a participant shares something important to them, we don’t cut them off to move to the next question.