The Public Prospective Longitudinal Understanding Study of 65+ Adults (PPLUS65)

Project Background

Health and aging policies and systems are typically designed from the perspective of people who run systems, rather than from the point of view of consumers. Even when advocates, policymakers, and providers do seek to learn from older adults, those engagements often have significant limitations: existing datasets and surveys do not adequately focus on priority populations or capture the lived experience of older adults, and their insights often remain siloed within commissioning organizations and agencies.

To address these limitations, the Public Policy Lab is partnering with The SCAN Foundation to conduct human-centered research in communities nationwide. Our goal is to highlight actionable findings and insights about older adults’ health and wellbeing needs. While we’ll be speaking to people from all sorts of backgrounds, we’re especially interested in hearing from people from historically underserved or marginalized communities.

By developing the right kind of public data, from the highest priority populations, while building a coalition of committed partners to use that data, this project has the opportunity to shift the conversation on what needs to be done to build a society that works for older adults, their families, and all of us.

Communities

Older Adults

Findings

What We're Researching

Research Locations

We’ve conducted in-depth human-centered research activities with 66 older adults from seven areas across the country. By concentrating research in a set of locations, we hope to gather community-level, as well as individual, insights.

The locations represent diverse geographic areas, population densities, political leanings, and U.S. Dept. of Health & Human Services (HHS) regions. We additionally selected for states in which more than 10.7% of the population is dually eligible for Medicare and Medicaid.

Completed Research Locations

We visited locations that reflect a diverse array of geographic regions, population densities, political leanings, U.S. Dept. of Health & Human Services (HHS) regions, and states in which more than 10.7% of the population is dually eligible for Medicare and Medicaid.

BIPOC and/or Latinx Participants

Rural Participants

Dually Enrolled Participants

Participant Sample

Our target sample composition was based on engaging with The SCAN Foundation’s priority populations — older adults who are Black, Indigenous, People of Color (BIPOC), low-income, or living in rural locations where healthcare isn’t easily accessible — at levels equal to or greater than the projected population of 65+ adults in the year 2040.

While a number of our respondents indicated that they were of Indigenous descent, none are enrolled members of a sovereign Tribal nation. In all other instances, we exceeded our targets for engaging lower-income, BIPOC, and rural participants.

Inquiry Areas

Inquiry areas are broad topics or categories of knowledge that we seek to understand through research. Inquiry areas apply to all participant or stakeholder types, and they are used to inform research methodologies, discussion guides, and desk research.

To develop our inquiry areas for PPLUS65, we collaborated with TSF staff and also examined precedent surveys and studies of older adults. We identified four areas of interest that we believed could be further illuminated through qualitative human-centered design research.

These following inquiry areas guided our research engagements with older adults, their caregivers, and advisory committee members.

Research Methods

We recruited our cohort of 65+ older adults through Area Agencies on Aging, local senior centers, and institutional and academic connections of the project’s 25-member advisory committee. Recruiting materials were distributed on social media and also printed and posted at high-traffic areas at CBOs’ physical locations and other community hubs.

All participant-facing materials were written in plain language to ensure they were accessible to a wide range of participants. Key materials were also translated into Spanish and Chinese (both traditional and simplified) in order to reach participants whose primary language is not English.

Pairs of researchers conducted semi-structured interviews in participants’ homes or in agreed-upon community spaces, such as senior centers, churches, and libraries. Teams traveled directly to participants for these in-depth conversations, leaving behind a packet of independent activities to be completed over the following weeks and returned by mail. Our researchers conducted interviews in English, Spanish, or Cantonese, and activity materials were provided in the participants’ preferred language.

Participants received $200 for the initial interview and will receive up to a total of $500 if they participate in follow-on activities. Participants who take part in all activities will have provided about ten hours of their time.

Completed Activities

At this stage of the project, all older adults have completed about three hours of research.

Semi-Structured Interviews

Our in-depth interviews focused on older adults’ experiences of aging and accessing healthcare services. Before beginning, we walked participants through a comprehensive consent process that explains the project, describes how the information collected will be used, and offers contact information for questions or concerns. All participants were able to specify exactly what we could collect from them and what we can share publicly.

Our goal in semi-structured interviews was to use our inquiry areas as a guide, but not to follow a predetermined script or matrix of questions. We aim to create an environment where participants feel comfortable, allowing our professional qualitative researchers to explore interesting stories as they emerge during the engagement. We carried lightweight equipment—just a tripod, light, and small microphones—to minimize the intrusiveness of recording.

Independent Activities

The first activity we provided for participants to complete on their own is called Who I See. It asks them to map their social network by filling out worksheets about the people they see on a daily, weekly, or monthly basis, including friends, family, and care staff, and also to describe what those interactions are like and how they feel.

The second activity, My Life Timeline, prompts older adults to chart their lifetime milestones of aging—along with their hopes for the future—and to provide more detailed explanations about a few of those moments.

Other Participants

We also conducted a handful of interviews with frontline staff at senior centers and with family caregivers to understand their needs in these roles and to extend our understanding of the needs of older adults.

Research Repository

During the next phase of work, we’ll synthesize the data collected from experts with our learnings from older adults to generate project insights. Ultimately we’ll create a repository of tagged research data and insights, along with complete source materials (scrubbed of personally identifiable information not approved for release).

What We’ll Design

To address the problem that health and aging policies and systems are not designed, foremost, to respond to user needs and preferences, we’re planning to create resources and products that elevate what older adults actually want from the systems they use, as well as how they find value and support in their lives. The project’s three major outputs are described below.

A research pool of older adults—representative of all older Americans, but over-sampled on marginalized populations — with the intention and related infrastructure to be able to return to that pool regularly over time, both to conduct follow-up research related to this project and also to address other specific research questions.

A repository of tagged research data, including both synthesized insights from research and direct quotes, transcripts, photographs, audio and video recordings, and/or other artifacts from research with — or created by—members of the pool of older adults, all categorized per a taxonomy to be developed by the project team.

An online platform to publicly share out findings and insights generated with those older adults regarding their healthcare access and delivery experiences, designed to highlight opportunities for national policy change and nationwide healthcare-systems improvement.

Project Implementation

The SCAN Foundation and the Public Policy Lab intend to launch the project publicly, with reporting and briefing events, in mid 2024.

Project Advisors

To deepen the value and utility of this project, PPL and the foundation have assembled a diverse advisory committee to bring their expertise and perspective to this work. The committee—composed of two dozen leaders from government, advocacy organizations, academic centers and think tanks, and industry—will be convened virtually four times over the course of the project. Committee members will be asked to provide input on project inquiry areas, research locations, research methodologies that will fill gaps in existing datasets, and how to best organize and frame findings to accelerate equitable policy change and health-system improvements.

I commend The SCAN Foundation and the Public Policy Lab for engaging in this project. This project will result in a valuable asset for researchers and policymakers that will fill an important gap in our resources."

— Federal Policymaker

Projects

The Public Prospective Longitudinal Understanding Study of 65+ Adults (PPLUS65)

Partners & Funders

The Project

The Outcome

The Public Prospective Longitudinal Understanding Study of 65+ Adults (PPLUS65)

Partners & Funders

The Project

The Outcome