May 26, 2021
My colleagues and I in the Center for Eldercare improvement at Altarum have long been advocates of the Program for All Inclusive Care for the Elderly (PACE) model as a way to promote high quality of life for those who are frail and disabled in their old age. As the COVID-19 pandemic swept through our nation in 2020, we began hearing remarkable stories about how PACE programs were implementing innovative and radical solutions to continue to provide effective support for participants and their families. These programs did not receive the same level of public attention and emergency support, including funding, services, and equipment, that other long-term care facilities received from the national Public Health Emergency Declaration and the resulting federal and state provision of supplies and guidance. However, neither did they have the same level of restrictions imposed. This flexibility built a platform for creativity and nimbleness that had the potential to exceed other models. Furthermore, unlike traditional Medicare providers, the PACE program took on responsibility for the participants and could not “bow out.”
PACE is a unique model that integrates medical and long-term care (LTC) services using an interdisciplinary team approach, making it possible for 95% of participants to remain in their homes and communities rather than reside in a congregate LTC setting. To participate in PACE, individuals must live within a designated service area, enter the program with a sustainable community living situation, and be certified as needing nursing home level of care. There are less than 200 PACE sites nationally, and under current federal restrictions, most older adults cannot afford PACE unless they are dually eligible for Medicare and Medicaid, or Medicaid-only. Thus, many middle-class Medicare beneficiaries who would otherwise benefit from PACE cannot participate in the program because of location, finances, or long wait lists. Though PACE has a strong base of supporters, evaluations of the program are scarce and those that do exist are either outdated or too methodologically limited to inform current and forward-looking policies and practices.
I first became familiar with the PACE model about five years ago on a research assignment for our center’s work with Huron Valley PACE in Ypsilanti Michigan. That initial visit transformed my thinking about what old age could be like, even if it includes physical frailty and cognitive decline. Though PACE participants are clinically equivalent to nursing home residents, its design enables them to live in their own homes or another other community setting of choice. PACE Centers provide both medical care and facilitate social opportunities for elders, while at the same time offering respite for family caregivers.
Huron Valley’s day center was bright and full of positive lively energy. While some folks were engaged in a group trivia game, others were playing chair volleyball with pool noodles, watching a movie, and even reading quietly in one of the cozy spaces reserved for relaxation and napping. In the on-site PT/OT gym, women rode exercise bikes while watching the morning news, while others used facilities to take baths and showers when their own homes were not retrofitted, and physicians and nurses saw participants needing medical or nursing care. The staff was kind, caring, and attentive, and both staff and participants alike seemed as if they genuinely enjoyed their time there.
During a series of interviews with PACE staff, participants, and family caregivers, it became clear that PACE was the option I would want for my own mother, should she experience frailty in her old age. I also found myself hoping that PACE would continue to be around and available to me, should I eventually need that level of care for myself. As an advocate I want wide adoption of the PACE model, making it available to all those who could benefit. As a researcher, I know that hearing anecdotal stories, like my experience with Huron Valley PACE, may get people momentarily interested but what really compels stakeholders and policymakers is objective, actionable data. The Center for Eldercare Improvement at Altarum sits at the intersection of research, clinical quality improvement, and advocacy. Our research and evaluation efforts use a data-driven approach to investigate and accelerate advancements in long-term care for beneficiaries, for policymakers and decision-makers, and for those delivering services.
The unprecedented national health emergency brought some new funding into the health services research sector. When the Agency for Health Research and Quality (AHRQ) announced a rapid turn-around funding opportunity early in 2020 to investigate how health programs fared during this time, we saw it as the perfect way to 1) undertake a methodologically robust evaluation of PACE as a program and 2) spotlight PACE at a time when their unique position in the long-term health care marketplace may have serendipitously allowed them to flourish.
The project kicked off at the beginning of 2021 with a multi-pronged approach using four research strategies in order to offer a well-rounded evaluation of PACE programs during COVID-19. Among the aims of the project are documentation of how PACE programs responded both early in the pandemic and later, including adaptations to maintain comprehensive services for existing participants, and adaptations that changed the populations served or the services provided. Other project aims include analysis of the impact on quality, safety, and value resulting from the adaptations made by PACE programs for PACE participants and for staff, and examination of whether utilization or quality performance differed by program size, sponsorship by larger organizations, community COVID-19 infection rates, or profit or nonprofit status. In addition, our project will provide initial estimates of the actual spread and the potential effects of broader spread of better practices.
Outcomes of the project include a comparison between the experiences of PACE participants and persons with similar characteristics not enrolled in PACE during the early, middle, and late COVID-19 eras; assessment of the merits of expanding PACE, including the likely effects of spreading and sustaining the promising adaptations in service provision and regulation; and rapid input into the policymaking process on the role of PACE in long-term care reforms.
As a psychologist, I know that motivating people to action requires solid numbers supporting the case along with a healthy dose of human stories and lived experience. I am leading what we have dubbed the "adaptation" arm of the project, which focuses specifically on discovering and cataloguing the novel ways in which PACE programs supported their participants during the public health emergency.
To begin to learn about PACE adaptations during COVID-19, we have developed a brief survey that is currently in the field. The survey questions focus on the challenges PACE sites faced during the pandemic and the ways in which they adapted to those challenges. Working closely with our partner in this project, the National PACE Association (NPA) and Trinity Health PACE, we are aiming to get near universal response from PACE organizations across the country. From these data, we will identify a few programs with which to implement in-depth qualitative research - including not only administration from that site but also participants and their family members as well. We will field a second survey later this year to gain insight into how PACE programs continued to evolve after widespread vaccination.
The second major portion of the two-year research project involves a comparison of the performance of PACE organization participants during Covid-19 and a cohort of matched Medicare fee-for-service beneficiaries headed up by Co-PI and eldercare expert Dr. Joanne Lynn. Bringing a deep knowledge of statistics and economic analysis, Nils Franco will work with Dr. Lynn to compare outcomes of PACE participants during the pandemic with their matched counterparts, using claims data and information from nursing home and home health assessments.
With funding from AHRQ, we hope to be able to carry out the most thorough and current evaluation of PACE innovation to date. If PACE programs generally did better in coping with the challenges of COVID-19, we will advocate that the model of care deserves closer attention in an era when one in five Americans will be 65 and older by 2030. As researchers though, we are committed to sharing our findings no matter what the results. Insights gained from this project will help us to continue our mission to improve care options that ensure quality of life in old age regardless of income, location, or level of disability.