Methodology
The People Say contains data collected through a qualitative research project, the Public Prospective Longitudinal Understanding Study of 65+ Adults (PPLUS65). Learn more about our sample size, sample composition, research locations and recruiting, inquiry areas, and research activities below — or visit the participants page to view profiles of the people we spoke with.
Our Research Approach
Our approach to research has two core characteristics:
- As human-centered research, it uses a qualitative or mixed-methods approach, focusing on documenting and sharing the lived experiences of participants, in their own words.While quantitative research can answer questions about breadth, such as how often and how many, qualitative research explores the “why” and “how” of people's beliefs and experiences.
- As applied design research, it's intended to inform or generate products, services, or policies — as opposed to theoretical research intended to identify generalizable knowledge. Rather than attempting to collect most common beliefs or experiences, design research often deliberately focuses on people and situations that are outside the (assumed) norm, so as to generate context and inspiration for improving service or policy delivery.
More than 17% of people in America are 65 or older, yet public policy and programs are typically designed for them, not with them. We believe that if policymakers can be presented with compelling data illuminating the real needs of older adults — and, importantly, how those needs evolve over time — they'll be more likely to act.
Our Sample
Sample Size
We planned a sample of 65 older adults, in a nod to the estimated population of 65 million Americans over the age of 65 in 2025. Ultimately, we engaged 66 older adult participants, along with seven caregivers and 13 subject-matter experts, for a total of 86 participants.
Some users of this site might be more familiar with quantitative research that involves many thousands of survey respondents. One reason that surveys demand large sample pools is because their data-collection instruments—for example, close-ended, multiple-choice questionnaires — produce a small number of data points per participant. For example, a ten-question survey would generate ten data points per participant, so a large number of participants are required to generate 'big' data that is statistically representative.
The intention of qualitative design research is not to produce generalizable findings, but rather to identify key themes that emerge from a group of participants and explore their contextual meaning. Qualitative design research uses methods derived from ethnography that prioritize open-ended engagements with people in their lived environment.
These kinds of research engagements generate what's called 'thick' data, in the form of hours of audio and video recording, opportunities for detailed contextual observation, collection of independently completed artifacts, etc., which result in hundreds or thousands of units of data per participant. (For example, each older adult participant represented in The People Say generated a transcript of 10,000 to 15,000 words, as well as a video recording containing significant amounts of unspoken contextual cues; additionally, 85% of the participants also created materials documenting their life journeys and their social networks, each comprising many dozens of additional units of data.)
It's therefore typical that qualitative researchers reach so-called 'code saturation' — a basic understanding of key themes — with as few as nine participants and may achieve 'meaning saturation' — “a richly textured understanding of issues” — with 16 to 24 participants (Hennick et al., 2017)
Sample Selection
When initially setting recruiting targets for our sample, we started by identifying a baseline distribution of gender, racial/ethnic, geographic (urban/suburban vs. rural), and income demographics that mirrors the current 65+ population. Beyond seeking to highlight lives and aspirations of all older Americans, however, the Public Policy Lab (PPL) and The SCAN Foundation share a commitment to focusing on the life experiences, needs, and preferences of populations that experience health disparities — particularly people of color, low-income people, and people who live in rural, medically underserved areas.
To deepen our research on these populations, we decided to oversample for participants that had those backgrounds or characteristics, with the aim of hitting levels equal to or greater than the projections of the demographics of the United States in 2040. That forward-looking focus allows our participant pool to speak to the more diverse future that America is aging into, serving project interests in developing policy now that addresses the needs of the next 15 to 20 years.
See below for current (2020) demographics versus projected 2040 demographics, as well as the target and actual number of participants we recruited, reflective of those different distributions. Note that the racial/ethnic categories in the table below (and the terms used) are drawn from U.S. Census materials.
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.
Research Locations
In 2020, 51% of Americans aged 65 and older lived in nine states: California, Florida, Texas, New York, Pennsylvania, Ohio, Illinois, North Carolina, and Michigan. We conducted in-depth human-centered research activities in five of those states — California, Texas, New York, Pennsylvania, and Ohio — as well as in Iowa and Alabama.
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.
By concentrating research in a set of locations, rather than finding 66 participants in 66 different places, we sought to gather insights on community-level trends, in addition to individual-level experiences.
Research Recruiting
We recruited our cohort of 66 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 also distributed via social media and posted at high-traffic areas at community-based organizations' physical locations and other community hubs.
As noted above, our aim was to assemble a research pool that over-represented people of color, lower-income people, and people who live in rural areas. This is a form of intentional sampling bias intended to elevate voices that are often underrepresented in policy decision making.
We were mindful of avoiding other unintended biases — for example, recruiting only individuals who are well connected to community networks or have better-than-typical literacy and technology skills. The Public Policy Lab's practice when working with community recruiting partners is to ask them to connect us to potential participants, but PPL then independently screens individual participants, ensuring that partners don't only provide us only with 'model' participants.
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.
Inquiry Areas
Inquiry areas are broad topics or categories of knowledge that we hope to better 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 the Public Prospective Longitudinal Understanding Study of 65+ Adults (PPLUS65), the Public Policy Lab collaborated with The SCAN Foundation 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.
The following inquiry areas guided our research engagements with older adults, their caregivers, and advisory committee members.
Research Activities
Semi-Structured Interviews
Pairs of researchers conducted semi-structured interviews in participants' homes or in agreed-upon community spaces, such as senior centers, churches, and libraries.
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.
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.
Independent Activities
The first activity we provided for participants to complete on their own is called My Life Timeline. This worksheet 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. Most older adults completed these timelines, and they are availble for viewing on each participant profile page.
The second activity, Who I See, asks participants 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. (Note that this activity's materials, although collected by the study, have not been included on The People Say due to the significant amount of personally identifiable information included. Researchers or others interested in these data should contact the study team.
Project Materials Reviews
Older adult participants were provided with copies of all their data units, in their original language, in advance of site launch. We asked them to indicate if there were any items that they did not want to have published. Based on this review, we removed roughly three units of data, from one participant. All data units remaining on the site have been approved for public sharing by the participant.
Research Compensation
Older adult and caregiver participants who took part in all activities provided about ten hours of their time. Participants received $200 for the initial interview and received up to a total of $500 if they participated in follow-on activities. Expert members of our advisory committee were also asked for about 10 hours of time and were offered an equivalent honorarium (which many declined). Our $50-per-hour compensation rate is intended to match or exceed the rate of pay of an entry-level PPL staff researcher.