As organizations expand their efforts to inform consumers and improve quality of care by releasing health care provider profiles, report cards, score cards, and the like, the lack of such information for residential and assisted living care has been questioned.
Indeed, a complaint often voiced by savvy older adults and their families is confusion about the different services, costs, and quality of care across the spectrum of assisted living. What’s worse, less-informed consumers don’t even know that such differences exist.
Others Agree
A statement issued by D.E.B. Potter, of the U.S. Agency for Healthcare Research and Quality (AHRQ), noted a need for consumer-friendly information to help individuals determine which residential living settings best meet their priorities and needs. Public reporting, which routinely compares providers according to standards of quality performance, may be one strategy to do so.
In April 2013, 40 organizational leaders from the federal and state governments, investment and trade groups, policymakers, health care providers, consumer advocates, educators, and researchers convened in Washington, D.C., to discuss the utility and role of public reporting in assisted living.
More than 80 percent of the attendees believed that additional efforts should be directed toward obtaining, compiling, and disseminating information related to specific services and supports offered by these providers.
Currently, only a minority of states require assisted living providers to compile information about their services, and even then the information is often not readily available.
Recommendations to promote more widespread public reporting were proposed by a majority of participants in three areas: use of publicly available information, content, and roles and responsibilities related to obtaining and disseminating the information.
Use Of Publicly Available Information
Consumers want to be able to compare providers to guide their decision making. Therefore, relevant information about specific services and supports should be made available to consumers in advance of selecting a residence. All of the conference attendees agreed that consumer information is important, while also recognizing that the amount of information potentially of benefit could become overwhelming. Consequently, information should be provided in a limited number of select areas.
Recently, the 18 organizations comprising the Assisted Living Disclosure Collaborative determined that consumers would benefit most from information related to basic features of the setting, move-in and move-out processes, service provision, policies, charges and payments, staffing, and environment. Based on the collaborative’s work, a provider information tool to use to document this information is being finalized by AHRQ.
Consumers also may be guided in their quest for information by some of the many consumer guides available, such as the one developed by the National Center for Assisted Living, which can be found on the organization’s website, at
www.ahcancal.org and clicking on Resources & Publications, Consumer Resources.
Beyond consumer education, publicly available information could inform providers of the services that others offer and potentially motivate them to change or improve their services. The information also could be useful to policymakers, regulators, researchers, and others.
Across a range of health care settings, providers and organizations respond to public reporting by changing their services and policies; in fact, it is suggested that public reporting is more likely to be associated with changes in provider behavior than with consumers’ selection of providers.
Quality improvement advocates also would benefit from this information, most notably if measurements of quality were standardized across all providers, a difficult aim given the lack of standardization in assisted living.
Available Information
Consumers would benefit from information related to survey results, verified complaints, and outcomes such as satisfaction. They and others would benefit to some extent from “report cards” or similar rating scales. Important considerations in providing rating scales are their transparency and timeliness; otherwise, it is not clear the extent to which the ratings reflect relevant concerns or whether those concerns have been rectified.
Similarly, independent validation of publicly reported information lessens the likelihood of reporting bias. However, no rating system addresses every individual need. Scales do not always reflect quality in areas that are important to consumers, and in some instances the information is not easily translated in terms of its application to a given individual. Consequently, ratings should not be the only information made available.
Medically related outcome information would be challenging to provide in a balanced manner due to variability in the residents who live in these settings, such as how they vary in their medical and functional needs.
Recognized dementia is reported in 42 percent of assisted living residents, 17 percent have diabetes, and an equal number (11 percent) have cancer or had a stroke; 26 percent have no impairments in activities of daily living (ADLs) such as bathing or dressing, while 38 percent are impaired in three or more ADLs.
Further, settings differ in their clientele, with smaller settings historically providing care for residents with more functional and cognitive impairments. Differences such as these complicate comparisons of change in conditions over time.
Some of the information that is relevant to consumers is subjective. Consumer-provided ratings may best provide this type of individualized information.
Individualized, person-centered care is increasingly recognized as important, including in assisted living.
Currently, researchers from the University of North Carolina are working with the Center for Excellence in Assisted Living to develop resident and staff questionnaires to assess these stakeholders’ perspectives of person-centeredness in assisted living. However, because close-ended questions may not adequately capture individuals’ lived experiences, Web-based consumer comments are important and expected to increase in use.
Roles And Responsibilities
State mandates may be necessary in order to collect and report detailed information on all providers, because not all providers may want to share detailed information in advance of a consumer visiting their residence, or to provide information to a central reporting source.
Attendees noted that public reporting would create a burden for providers, likely necessitating a mandate for them to do so. Consequently, it would be beneficial to develop a reporting system in which providers want to participate. Providers want consumers to be educated and to have appropriate expectations regarding care, so the underlying intent of this effort need not be antagonistic.
Independent, reputable, unbiased organizations should be responsible for disseminating public information, which may be state governments or others.
Many existing resources that provide information about assisted living, or offer services to select a setting, are marketing tools or entities that receive payment at the time of placement. Consumers are not aware of the bias of these sites, thereby necessitating dissemination by states, universities, or other neutral parties.
Currently, a handful of government, consumer, advocacy, provider, and educational organizations have undertaken Web-based public reporting initiatives. Some, such as Ohio’s Long-Term Care Consumer Guide (
www.ltc.ohio.gov/FacilitySearch.aspx) and North Carolina’s Assisted Living Comparison Expert’s (
www.alce.unc.edu), allow users to conduct a personalized search of desired options, and the latter encourages consumers to post personalized reviews of residences.
Next Steps
While the future of public reporting in assisted living is not yet clear, these recommendations constitute a next step agenda. It appears most useful to consider a three-tiered approach to public reporting in assisted living, including information derived from state surveys, standardized information in areas most relevant to consumers, and personalized consumer reviews.
The intent of these efforts is to promote consumer education, decision making, and choice to achieve a better fit between the individual and the residence, as well as to promote quality care and outcomes.
Sheryl Zimmerman, PhD, is Kenan Distinguished Professor in the Schools of Social Work and Public Health and co-director of the Program on Aging, Disability, and Long-Term Care at the Cecil G. Sheps Center for Health Services Research at the University of North Carolina at Chapel Hill. Lauren Cohen, MA, is associate director of the Collaborative Studies of Long-Term Care and research associate in the Program on Aging, Disability, and Long-Term Care at the Cecil G. Sheps Center for Health Services Research at the University of North Carolina at Chapel Hill. Christina Horsford, MSW, MPA, is a doctoral student in the School of Social Work at the University of North Carolina at Chapel Hill; funded by the U.S. Agency for Healthcare Research and Quality.