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Nursing Home Residents Must Be Heard. Consumer Experience Data is the Key.

Carrie Blakeway Amero standing on front steps with her grandparents

When my grandmother’s health started to decline in the mid-1990s due to progressive vascular dementia, we looked all over central Texas for a good place for her to live. But we had no idea whom to go to for advice and recommendations, outside the facilities themselves. So I found myself visiting facilities and randomly approaching people who looked like they might be family members of residents, hoping they would tell me about their experiences.

The result of that best-available “research”: checking my grandmother into no less than six different nursing homes, only to check her out of each one following six disturbing experiences. By the end of that spell, we’d determined we could take better care of her at home with a live-in personal care aide. We were lucky we had that choice and could afford it.

Since then, access to information on nursing homes has improved, but we still have a long way to go. Now it’s time for the next big step forward, and the opportunity lies in a concept once dismissed as immeasurable or, at best, unreliable: consumer experience. But today measuring consumer experience with real data in nursing facilities is not only doable, it’s a must.

Incremental Progress

My grandmother passed away in 1998—a notable year, incidentally, for progress in availability of information on nursing homes. That year the Centers for Medicare & Medicaid (CMS) launched Nursing Home Compare, a tool to provide standardized, unbiased information about nursing home quality so individuals and families can make informed choices. I would have loved to have had it available to me for my grandmother. Since then quality measures have continued to advance and expand, with Nursing Home Compare now folded into the larger Care Compare, which offers quality ratings for nursing homes, hospitals, home health providers, clinicians and other providers. Just this year, CMS added new information about nursing home staffing (e.g., turnover and staff ratios).

This information is immensely helpful for individuals and families trying to choose a facility.  But consumers exploring facility care still can’t access the insights of those who know a facility best: residents and their families. Like me with my beloved grandmother, people want to know about consumer satisfaction and experience—concepts at one time used only in the business setting.

Why Consumer Experience Matters Most

Years ago, in the long-term care field consumer satisfaction and experience indicators were seen as less important, less rigorous, or less meaningful than objective health measures. But we know now that the consumer voice is integral to quality improvement efforts—not just on a retail company’s website, but in health care, in addition to service delivery and health outcome measures. [i]

There is also a difference between consumer satisfaction and the next frontier, consumer experience. How satisfied consumers are with services is important, but consumer experience surveys get to the heart of what consumers actually experience and observe on a day-to-day basis. This is much more illuminating than rates of consumer satisfaction, a measure notorious for how responses vary and its subjectivity. We need to know what consumers have seen and heard and lived through, and they need a way to report that information objectively.

Understanding consumer experience is especially crucial for nursing home residents because they spend 24 hours a day in these facilities. It is important to know about bed sores, the use of anti-psychotic drugs, and to track vaccination rates, but we need to do more. For many residents, their entire quality of life is dependent on the quality of the facilities, the kindness of the staff, the dignity with which they are treated, the richness of the opportunities residents have for physical and social activities, and whether and how the facilities support strong family and community connections.

In the context of COVID-19 vaccinations, we need to know if residents are asked if they want a booster shot, or if they (and their families) have been educated about the efficacy of vaccines and given the opportunity to discuss the risks and benefits with clinicians. Residents are the only people who can tell us. There are no acceptable proxies for this first-hand information. In addition to residents, family members also have valuable perspectives. They sometimes see problems first, notice changes in staffing levels or facility practices and policies, or recognize changes in their relative’s physical or mental health.

There have been efforts to invest in consumer satisfaction survey efforts. The industry itself has developed resident and family satisfaction tools, such as CoreQ, and many facilities field their own satisfaction surveys to share the findings with potential consumers and families. The National Quality Forum also maintains a voluntary consensus-based set of nursing home measures.

Again, though, while reporting on satisfaction would be a great first step, consumer experience is the key. The National Academy of Science’s 2022 report on nursing home quality [ii] noted that with consumer experience data in hand, in addition to satisfaction data, nursing homes’ own quality improvement efforts would be more effective, driving quality up across the whole industry.

Tools Waiting in the Wings

Fortunately, the consumer experience surveys we need already exist. CMS and the Agency for Healthcare Research and Quality tested and validated a set of surveys designed to capture information from residents, former residents and families of nursing home residents in 2006-2007, part of the trademarked Consumer Assessment of Health Providers and Services (CAHPS®) initiative. Hospitals and other Medicare and Medicaid providers are required to field other CAHPS® surveys and report the findings. Yet the Nursing Home CAHPS® surveys have not been required, embraced or widely adopted, and Care Compare still does not include any consumer feedback data.

To be sure, there are barriers to performing this data collection—specifically, the cost of survey administration and the complexity of surveying residents who may be frail, medically fragile or living with dementia. However, they are not insurmountable.

AARP will publish the next edition LTSS State Scorecard in 2023 and will examine progress. [iii] This edition will include more indicators that speak to nursing home quality, seeking to identify and recognize states with strong performance in this area. Some states already use consumer experience surveying for HCBS programs, which the Scorecard includes as a way of drawing attention to this good practice. Ideally, this type of data would be collected across all LTSS settings. Nursing home residents and their families possess the most valuable information about facility quality. Future residents need and deserve access to it. 

Are you looking for a Nursing Home?
Several resources are available that discuss what to look for and how to make the choice.

[i] Al-Abri R, Al-Balushi A. Patient satisfaction survey as a tool towards quality improvement. Oman Med J. 2014 Jan;29(1):3-7. doi: 10.5001/omj.2014.02. PMID: 24501659; PMCID: PMC3910415.
Hall AE, Bryant J, Sanson-Fisher RW,, Fradgley EA, Proietto AM, Roos I. Consumer input into health care: Time for a new active and comprehensive model of consumer involvement. Health Expect. 2018 Aug;21(4):707-713. doi: 10.1111/hex.12665. Epub 2018 Mar 7. PMID: 29512248; PMCID: PMC6117488.
[ii] National Academies of Sciences, Engineering, and Medicine 2022. The National Imperative to Improve Nursing Home Quality: Honoring Our Commitment to Residents, Families, and Staff. Washington, DC: The National Academies Press.
[iii] With funding from The SCAN Foundation, The Commonwealth Fund, and The John A. Hartford foundation.

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