Developing and producing the PRI Representing Identity Guide drove change, inspiring ongoing dialogue
“We in PRI have a responsibility to shape the present and future of representation and inclusivity—from inside our own organization to the broader world around us. In the work we create, conversations we have, and teams we build, it is the duty and responsibility of the AARP community to serve as a 'wise friend and fierce defender' for everyone, everywhere.” —From Representing Identity: A Guide
Identity is personal. It isn't just about the terminology we use or the boxes we check. It is about our sense of self. It embodies external characteristics including demographic factors, but also political opinions, religious beliefs, cultural influences, and moral attitudes, all of which guide our daily choices.
So, when a team of 21 Policy, Research and International (PRI) staff members set out to create a guide for measuring, acknowledging, and properly articulating identity in our work, they knew their effort wasn't a pro forma task. Collecting first-hand research, listening to one another, and seeking external voices with sensitivity and an open mind were all paramount.
The result, Representing Identity: A PRI Guide, is a living resource that was launched internally at PRI’s all-staff retreat in October 2021. It provides preferred terms for identity groups, guidance for ensuring accurate representation in research, and communications tips specifically for PRI's research and policy work. While it is available for all of AARP it is specifically aimed at, and intended for, PRI.
The resource will continue to be updated, because identity and the language we use to describe it is an evolving, growing concept. The guide is not comprehensive. Other identities clearly call for attention. People with disabilities, multiracial Americans, Muslim Americans, and others will be added to the guide in future iterations.
"My hope is that this guide serves as the starting point for everything PRI does, and inspires us to change the way we work,” said Executive Vice President and Chief Public Policy Officer Debra Whitman. “While it offers many practical tools, it also emphasizes that meaningful representation goes far beyond mere words, images, and data.”
The project, however, wasn't only about the resource guide produced. The path that led to the project and the actions that followed were equally important.
“We moved the dial for PRI and how we think about, reference, and represent people in a respectful way,” said Alicia Williams, senior research advisor with AARP Research and a co-leader of the first phase of this workgroup. “We were all dedicated volunteers seeking to make an impact, beyond our normal work contributions, in navigating and promoting dialogue that reexamines our behaviors and framework for understanding identity.”
Asking questions, inviting people to the table
The genesis of the project came before the COVID-19 pandemic, seemingly light years from today. Noticing inconsistencies in how PRI referred to and acknowledged identity, Whitman charged the workgroup with producing a useable guide that offered specifics for appropriate language and concrete tips on forming and conducting research that is inclusive of different identities. Her expectation was that the guide would be used often, informing work at all stages.
The effort began with listening and probing.
The two-year process, which took place largely through remote work during the pandemic, began with direct survey research of members of various identity groups and knowledge gathering by reaching out to experts to ask questions and engage in dialogue. The group organized itself into smaller teams to focus on each of the various identity groups. They focused on six: Asian American, American Indian/Alaska Native, Black/African American, Hispanic/Latino, Native Hawaiian and Pacific Islander, and Lesbian, Gay, Bisexual, Transgender, Queer, and other gender and sexual identity minorities.
From the beginning the workgroup sought collaborators both inside and outside AARP. The Office of Diversity, Equity and Inclusion was among the main supporters within the enterprise, aiding in connecting workgroup members with community leaders and multicultural experts, moderating some of the speaking panels, and offering feedback on the resource before publication. Executive Vice President and Chief Diversity Officer Edna Kane Williams was an early and ongoing supporter. “I was impressed by and appreciative of the leadership PRI showed in taking on this project,” she said. “The result is a practical but meaningful tool that will only strengthen the research and policy solutions this team produces."
A series of panel discussions focusing on each of the six identity groups were held throughout 2020. All virtual. All enlightening. The vibrant discussions provided depth, understanding, and above all guideposts for accurately and thoughtfully communicating about the wide range of populations AARP serves.
AARP Research also conducted a rigorous nationally representative survey of 4,998 adults ages 24 to 75. The 15-minute questionnaire was fielded in November 2020 in both English and Spanish, and yielded data and insights that fueled many of the conversations, inquires, and actions of the workgroup.
“This is not just data, these are human lives behind the numbers,” said Alicia Williams. “The representative survey provided access to data we would never have had access to if not for this project.”
Relationships with external experts and organizations strengthened throughout the process, exemplifying how inclusivity can meaningfully change and improve work processes. Establishing connections with academic and nonprofit experts throughout the country created a broad circle of voices and cultivated lasting ties. Experts in the fields of public health, journalism, psychology, demography, youth development, political science, marketing among others provided strong guidance and insight.
'Nothing about us, without us'
In 2021, when the workgroup set out to compile into a written guide the knowledge and wisdom gained from its research, several themes emerged. Chief among them was the mantra: “Nothing about us, without us.”
“It's really a cultural change in the way we do things on a daily basis,” said Scott Tanaka, an advisor in PRI's core office, who was part of the first phase of the project. Scott now serves as phase two's co-lead with Senior Resarch Advisor Angela Houghton. “Getting the terminology was super important, of course, but we also focused on how we work. Real representation goes beyond language. It's about hiring diverse suppliers, bringing people of diverse identities to the table, and folding it all into our research projects and reports.”
As the guide has been circulated among PRI, Tanaka said he has fielded emails and questions prompting the discussions that the workgroup hoped to spur. While the guide gives some clear rules to follow, there are nuances. Sometimes there is preference in using a broader identifier, but if it's available, the guide encourages specificity. A key message of the guide is that the nuances are crucial. And respecting the perspective and differences among identity groups is equally important.
It's that understanding that is already driving change across PRI. For example, through the policy development process, the Office of Policy Development and Integration (OPDI) is examining how different groups are currently described and defined in our public policies to ensure the approach is informed by insights laid out in the guide. And AARP Research is requesting its vendors to include broader identity representation in the panels used for fielding studies. In being more reflective about whose voice is heard, there is an opportunity to demand more representation, and more diversity within the samples.
“AARP is a powerhouse; we have the ability to drive change,” Williams said. “You have to listen to the smallest voices, to give those who are not often heard a voice. There are a lot of people who aren't part of the majority, and we must represent their viewpoints.
PRI's COVID-19 rapid response, and how the pandemic transformed it's big-issue work
“Societies at the local, national, and international levels must find ways to better support their citizens who are at greatest risk of the direct and indirect harms of COVID-19. Indeed, health system infrastructure and preparedness play a key role in the COVID response, and this varies widely country to country.” —Special Report COVID-19 and Brain Health: The Global Council on Brain Health's Recommendations on What to Do Now
In the summer of 2021, the AARP Nursing Home COVID-19 Dashboard illustrated a striking message: COVID-19 vaccinations among residents and staff of long-term care facilities were highly effective in preventing illness and death.
“We were able to take a massive set of data from the Centers for Medicare and Medicaid Services (CMS) and put it into a format that people could easily understand, and it told a very clear story,” said Ari Houser, a senior methods advisor with the AARP Public Policy Institute (PPI) and the main developer of the Dashboard. “It was not long before AARP rallied around the data to issue its call on nursing homes to mandate vaccines for all residents and staff.”
Built in 2020 in collaboration with the Scripps Gerontology Center at Miami University in Ohio, the Dashboard provides four-week snapshots of the virus' infiltration into nursing homes, tracking five distinct categories—resident deaths, resident cases, staff cases, staffing shortages, and urgent needs for personal protective equipment. In 2021, data on vaccinations were added, revealing a clear difference between those with high rates of vaccinations and those with lower rates. The Dashboard, which is led by AARP Senior Vice President and PPI Director Susan Reinhard, quickly earned a reputation as a go-to source for anyone who wanted to understand how the pandemic was unfolding in nursing homes across the country.
As much of a game changer as the Dashboard proved to be, it represents only one piece of Policy, Research and International's (PRI) COVID-19 offensive during the pandemic's second year. Throughout 2021, the group's tools, research, policy work, and responses commanded attention by offering clarity and trusted analysis on both new and emerging issues.
To be sure, the pandemic affected virtually every facet of PRI's work. It forced a re-evaluation of ongoing housing issues and initiatives, and shaped conversations about healthy longevity. Caregivers' needs, prescription drug prices, labor force participation, food insecurity, and financial decision making were all impacted, and PRI responded, seeing both urgent need and longer-term opportunity.
From pandemic data to systemic change
The steady release of pandemic information kept AARP at the forefront of driving conversations, as it shared its expertise with stakeholders and the media alike. The Dashboard alone garnered media attention in 36 states for more than 770 news stories or opinion pieces, as well as 15 national news stories. Additionally, across PRI more than 275 reports, blogs, and other publications and releases were distributed, all touching on some aspect of the public health crisis.
The Dashboard revealed clear gaps in vaccine protection at the state and community levels, allowing PPI to deliver insights that Community, State & National Affairs' (CSN) advocacy team could use to target specific states and regions. Working with state offices, PPI provided timely data that supported long-standing efforts to address critical problems like nursing-home staffing shortages. It also allowed for targeted messages based on vaccination rates in different states.
“We were able to use the magnitude of the numbers, and the shocking data, to draw attention to underlying problems that are longstanding,” Houser said. “Nursing homes have been ignored by the public at large for too long. But the devastating impact of the COVID-19 deaths in nursing homes brought needed attention to the challenges with staffing, retention, and infection control. The Dashboard got the public and policymakers' attention.”
As the Dashboard called immediate attention to the dire situation facing nursing homes, PPI sought to amplify their ongoing work on re-imaging Long-Term Services and Supports (LTSS). A series of reports designed to catalyze the transformation and modernization of the nation's LTSS system was released under the umbrella brand of “LTSS Choices,” (think: consumer choice). Many of the ideas were not new—and had long been targeted by AARP as areas in need of change—but the pandemic provided a new lens through which to consider them, and the opportunity to elevate issues and spark change. Some topics covered: small-house nursing homes, paying family caregivers, and training and credentialing the LTSS workforce.
“We had a clear opportunity to showcase current responses to the pandemic that could be ramped up to become fully operational long-term solutions,” said Reinhard. “It was critical that we capture the attention of the successful evidence-based mitigating solutions implemented during the pandemic and encourage fully formed new models. We focused on identifying the regulatory and funding barriers that limit the widespread use of promising practices. And we offered tangible solutions.”
PPI's Thinking Policy blogs, often as companions to new reports, also told the evolving stories of the pandemic: Olivia Dean wrote about food insecurity. Jennifer Schramm gave valuable insight to labor and employment information. Catherine Harvey emphasized the importance of liquid savings and the value of the federal stimulus payments. Lori Trawinski highlighted the perils of age discrimination and the need for workplace equity.
The COVID-19 pandemic amplified longstanding policy challenges for older adults. PRI's Office of Policy Development and Integration (OPDI) led the process of updating AARP's public policies to empower the enterprise to address these challenges with both policies responding to short-term needs as well as driving long-term solutions. OPDI prepared AARP to fight for systematic change through a wide range of policy areas and structural improvements, including addressing the unemployment insurance system and the Supplemental Nutrition Assistance Program (SNAP), improving training in long term care settings, and ensuring universal access to affordable and reliable high-speed internet.
Equity and identifying a path to recovery
In alignment with an enterprise priority, equity was at the center of PRI's COVID-19 response and recovery efforts. Sound policies ushered a path forward.
As the COVID-19 vaccine was released, not only was the Dashboard updated to provide valuable insights into vaccination rates in nursing homes, but other reports from PPI and AARP Research also looked at the vaccine-related data. These reports explored vaccine hesitancy among older adults (even pre-pandemic), vaccine distribution, and strategies to help adults 50-plus make informed decisions about getting vaccinated. Findings illuminated a host of issues, such as racial and ethnic disparities in vaccine attitudes and access, bringing the issue to the forefront of dialogue and spurring policy and practice recommendations. AARP Research also explored victimization among Black and Latino people during the pandemic.
“Overlaying all our work were the contexts of disparities, particularly for the communities that suffered greater rates of morbidity, mortality, illness, and fewer opportunities for financial security,” said Jean Accius, senior vice president for Global Thought Leadership. “It is our collective responsibility to ensure that the solutions we advance are equitable for individuals across the lifespan and health span so that no community suffers the unnecessary burdens of inequities.”
The Thought Leadership team's Building Equity in Longevity series harnessed this work, providing a digital compendium of insights and solutions from a wide variety of experts and leaders. Prioritizing closing the longevity gap for those who have historically faced health and wealth disparities required a multiprong approach since the source of the issue cuts across virtually all parts of society, from livable communities to health care.
Meanwhile, OPDI began leading a policy exploration to examine disparities across health security and financial resilience, many of which the pandemic amplified. To increase financial security throughout the lifespan, OPDI looked to ways for ensuring high-quality jobs, building savings and wealth, and fostering affordable and appropriate housing. The team also examined policies to improve access to affordable, comprehensive health insurance coverage for all populations, culturally competent care that builds trust, and evidence-based care that is formed from research data inclusive of all populations.
“The COVID-19 pandemic exposed long-standing inequities of our society through the disproportionate rates in infection, hospitalization, and death among Black, Latino, and American Indian/Alaska Native people, who also faced greater economic challenges in the pandemic-related recession” said Dorothy Siemon, senior vice president, OPDI. “It is imperative that we renew and increase our efforts to identify and implement policy interventions that can more quickly and effectively eliminate these disparities.”
Addressing inequities also meant zeroing in on consumer protection policies. OPDI's work led the AARP Board of Directors to approve new public policies to provide consumer protections in declared emergencies. These included prohibitions on price gouging and product hoarding, assistance for student loan borrowers, and programs to prevent evictions, foreclosures, and utility shutoffs.
Reaching the consumer
Even as experts worked toward equity in policy reforms and broad systemic change, PRI also got the healthy-daily-living message directly to individuals.
As usual, it started with gathering data and evidence. AARP Research conducted deeper dives into how the pandemic affects the lives of people 50-plus, including examining how people are assessing their own current and future financial situation. Other reports tackled scam-related awareness and healthy-habit shifts since the start of the pandemic. And AARP Research continued to update its “COVID-19 Tracker,” gathering in one easy-to-access Infonet page timely and relevant consumer perspectives from the most recent polling, as well as from newly published resources from the field.
Out of this data came concrete solutions. Those included toolkits for state offices to disseminate information among communities, webinars, infographics, and more. In addition, the March release of the Global Council on Brain Health COVID-19 and Brain Health report came with specific recommendations for protecting brain health. The report also provided in-depth coverage of the known neurological COVID-19 short- and long-term symptoms and urged funding broader research.
“We are just starting to understand the science behind the direct and indirect threats of COVID-19 and brain health,” said Policy Advisor David Parkes, from PRI's Policy and Brain Health team. “We know there are cognitive effects such as an increased risk of developing dementia and there is a relationship between brain fog and long-haul COVID, but the research and science are still emerging. We also know there are threats to mental well-being from social isolation. We tried to address all of those and give people the tools to understand what they can do to protect their brains.”
By focusing on virtual townhalls, working with state offices and giving tips through media interviews and through AARP's direct-to-consumer efforts, the Policy and Brain Health team made a forceful case to maintain focus on the pandemic's mental and cognitive impact.
“Awareness needs to be done on several fronts, and we tried to cover them all,” Parkes said. “We ensured we were at the scientific conferences and engaging with experts in the field, but we also knew it was important to share what we already know. There are things people can do now to help navigate the pandemic and we had an obligation to bring our numerous reports to life and share that knowledge.”
Reimagining the conversation on healthy longevity through action and leadership
“The opportunity to live longer, healthier, more productive lives is one of humankind's greatest accomplishments. Capitalizing on such an unprecedented opportunity, however, will require new approaches to how we live and age and a commitment to innovation across all sectors of society, from the personal, private, and public.” —AARP CEO Jo Ann Jenkins, AARP International's The Journal
When Vice President of Thought Leadership Staci Alexander opened AARP's 3rd global conference, she passionately challenged an audience of prominent world leaders to harness the event's energy to build more resilient societies that support healthy longevity.
“This conference is all about moving forward with intention by clearly examining the key drivers of healthy longevity: health, wealth and equity,” Alexander said. “Our goal is to challenge leaders and stakeholders to expand our thinking as we initiate and embrace solutions for achieving healthier, longer lives.”
What followed was a two-day virtual event that proved to be a powerful display of global leaders from across all sectors—people in prime position to enact change—embracing that very vision. AARP CEO Jo Ann Jenkins led the charge, setting the tone for actionable, evidence-based steps that can be implemented in communities around the world.
The conference was a milestone moment in itself, and yet it was just one piece of Policy, Research and International's (PRI) 2021 efforts that advanced its comprehensive strategy to address the reality that longevity has not always equated to healthier, longer lives for everyone. Through a range of work, PRI and AARP are shifting the conversation from one with a narrow focus on increased lifespan to one that explores and promotes longer health span, and they are doing it through several tools and tactics. Achieving advances on this front took many forms in 2021.
Global conference: convening influential leaders
Unquestionably, the October conference served as a beacon of this importance movement and in fact turned out to be a call-to-action. The conference, Redefining Health: New Approaches for How We Live and Age, held October 27-28, assembled distinguished leaders who affirmed the moral responsibility of developing long-term solutions regarding aging and longevity, which will require multifaceted approaches.
Individual voices commanded respect; collectively they demanded action.
United Nations Secretary-General António Guterres urged building a new normal that values and supports older adults everywhere. UnitedHealth Group CEO Sir Andrew Witty spoke ardently about the roles of social determinants of health and health equity. And U.S. Department of Health and Human Services Secretary Xavier Becerra emphasized making health care accessible and strengthening investments in quality and accountability.
The focus of the conference deliberately harnessed the energy of a growing global movement to proactively support healthy aging—and in many ways epitomized so much of the work PRI is doing on the healthy longevity issue. The event captured and advanced AARP's vision, and intentionally supported the United Nation (UN) General Assembly's designation of 2021–2030 as the Decade of Healthy Ageing.
Here is where the conference links to PRI's far-reaching strategy and other activity on the healthy aging issue.
Influencing a global roadmap for a mounting movement
With its Decade of Healthy Ageing, the UN has identified four interconnected action areas, all of which align with AARP goals and are vital for achieving longer health spans: promoting age-friendly environments, combatting ageism, delivering person-centered integrated care, and improving access to long-term care. As part of the process, AARP offered guiding questions and direction for finding solutions.
Further reflecting the alignment between global-level initiatives and AARP work was content appearing in AARP International's The Journal. Writing in the 2021 edition, World Health Organization Director-General Tedros Adhanom Ghebreyesus touted the importance of the Decade goals, offering perspective on how to achieve them. Also contributing to the Journal, AARP CEO Jo Ann Jenkins emphasized how this work is not new—for years the population has been aging at an increasingly rapid pace, elevating the urgency to meet the needs of older people—but that the pandemic has profoundly influenced the efforts. Even as older people, and those with underlying health conditions, were hit the hardest, the pandemic redefined how we think about solutions, Jenkins said.
Meanwhile, a clear, evidence-based vision for taking decisive, multisector action was the basis for AARP's collaboration with the U.S. National Academy of Medicine's aim to create The Global Roadmap for Healthy Longevity. Launched in 2019, the initiative included three convenings looking at everything from social determinants of health to the biological process of aging. The final meeting was held virtually in April 2021, setting the stage for development of a global consensus report offering specific recommendations, slated for release in May 2022.
“We are really excited about the recommendations, but they are just the beginning,” said Erwin Tan, director for health on PRI's Thought Leadership team. “What we are going to be responsible for is elevating those findings and ensuring the solutions are funded and put into place. We have prompted the right questions, but next we need to empower communities to follow the roadmap so everyone has the ability to have a longer health span.”
Promoting global best practices
On the heels of the global conference, AARP International released its third Aging Readiness and Competitiveness (ARC) report, and a toolkit collaboration with FP Analytics, both presenting promising practices and innovations to support healthy aging around the world. The ARC report, developed with the support and expertise of Economist Impact, centered on challenges and policy trends around health and wellness.
Similarly, the release of the toolkit done in collaboration with FP Analytics served as a call-to-action for communities to learn from one another. Built from a series of expert roundtables and one-on-one interviews, the toolkit outlines global and regional trends and spotlights people-centered policies and programs that address gaps.
“We don't have to wait to take action,” said Peter Rundlet, AARP vice president of International. “We are seeing demonstratively effective ways to support healthy aging that should be replicated. These programs and practices come from small feisty operations, as well as larger, well-funded efforts. Most importantly, many were developed under the pressures of the ongoing COVID-19 pandemic, revealing novel thinking worth sharing. The toolkit reflects the voices on the ground, doing the daily work.”
On-the-ground legwork for healthier aging
Since healthy aging goes beyond our physical health and involves many factors—encompassing brain health, wealth, the built community, the environment, equity, and various other social determinants of health—healthy longevity conversations must be connected to the intimate, daily lives of older adults.
The Boosters for Joy resource guide spoke to those too-often private moments. By providing easy-to-access tools for helping individuals stay socially connected and emotionally supported during the long stretches of pandemic isolation, the guide continues to foster healthy lives now, not just in the future. Produced by PRI's Policy and Brain Health team and based on evidence from the Global Council on Brain Health, it is filled with engagement ideas for connecting through the arts, podcasts, technology how-to guides, games, and volunteer opportunities.
Also embodying the communities where we live, healthy aging is impacted by factors like housing, access to services, and transportation. PRI's efforts to promote livable communities for all continued in 2021 with AARP's collaborative initiative with Lowe's, offering consumers current, easy-to-access advice on ensuring their homes meet their needs as they age. Additionally, AARP Research explored the preferences of older adults when it comes to where they want to live and age (the short answer: at home and in their own communities). And the Public Policy Institute (PPI) documented community-based, scalable solutions designed to improve transportation services for older adults.
Healthy aging requires improving a long-term services and supports (LTSS) system that has long been lacking. Through its LTSS Choices initiative, PPI highlighted innovative system-level solutions like small-house nursing homes, improving functional independence, and paying family caregivers to provide care.
And fighting ageism means revealing how various forms of media depict older adults, and how those depictions influence perceptions. AARP Research took this issue head-on in reports looking at how images depict older adults and shape public opinion. The reports highlighted how outdated and inaccurate stereotypes still proliferate society.
Ensuring equity throughout
Underpinning all of PRI's healthy-longevity work was the commitment to addressing issues of disparities in longevity and elevating solutions centered around equity.
The Center to Champion Nursing in America examined ways to improve health equity by bringing more diversity to the nursing workforce. And the Policy and Brain Health team developed three major reports, issued by the Milken Institute's Alliance to Improve Dementia Care, addressing how to build equity for groups disproportionately impacted by dementia, including women, along with Native American, Black and Latino peoples.
The Building Equity in Longevity collection and Build Equity webinar series were also staples of this work. Additionally, the Equity by Design series, which brought together experts in the fields of city planning, architecture, and development and highlighted innovations for implementing an age-friendly framework to address disparities, ensured an equity lens was brought to conversations on the built environment.
A movement turned grassroots, national, and global
Meanwhile, the work continues as PRI pushes toward a vision encompassing a world of healthy aging and healthy lifespans—a vision shared by people ranging from community members working to create more affordable housing and equitable built environments, straight to leaders at the United Nations.
“Our work on healthy aging is more important than ever,” said Debra Whitman, AARP executive vice president and chief public policy officer. “The sobering impact of the pandemic on older adults and the rapid decline in life expectancy, especially among communities of color, must propel us to address inequities across the lifespan.”