Improving Decision Support Tools C A L I FOR N I A for the Long Term Care Consumer H EALTH C ARE F OU NDATION Introduction watchdogs, and long term care providers by The CalNHS.org Site offering an independent, reliable source of quality In 2002, the California HealthCare Foundation information. (CHCF) launched the CalNHS.org Web site, a Issue Brief free, public service. The site’s primary purpose Nature of the CalNHS.org Site Review is to help meet the growing consumer need As part of its ongoing efforts to improve for assistance in deciding on the appropriate CalNHS.org, in 2007 CHCF partnered with level of long term care for an individual, and in Howard Degenholtz, Ph.D. of the University of determining the quality of care among available Pittsburgh Graduate School of Public Health, long term care options. CalNHS.org provides Sam Boonin Consulting, and the HMS Group, comprehensive, consumer-friendly, comparative Ltd., to perform an extensive review of the site. information on nursing facilities, home health The purpose of the review was to delve into agencies, and hospice programs operating in the selection criteria used by consumers and California. The site also provides information providers with regard to long term care services, on congregate living, residential care facilities, and thereby to help CHCF develop a strategy continuing care retirement communities, and adult for refining the site. In particular, the researchers day care services in California. sought to explore the existing landscape of long term care decision tools, to review the type and Consumers can use the site’s resources and quality of information available to Californians practical information to assess options and to with regard to long term care decisions, and to compare specific facilities and services, in order specify potential improvements in CalNHS.org’s to make an informed choice for themselves or usefulness to decision-makers. for loved ones. The site includes information on a number of factors shown to have an impact on To accomplish these goals, the research partners quality of care, including: embarked on five separate project elements: K Staffing levels, turnover, and wages; 1.Focus groups with long term care consumers and professionals; K Quality measures; 2.Focus group surveys; K Complaint, deficiency, and citation rates; and 3.On-site meeting with residents of a residential K Costs and financing. care facility; All of the data that appear on CalNHS.org come 4.Interviews with long term care administrators, from state and federal government sources or as well as with individual experts and with accrediting agencies. Updated quarterly, the site representatives of organizations focused on F ebruary benefits consumers, health professionals, quality long term care issues; and 2008 .Comprehensive overview and comparative analysis of 5 from this research project, however, indicates that out Web-based long term care decision resources, as well as of all these potential audiences it is overwhelmingly other health care and well-known consumer product consumers who use the sites, and that the primary Web sites. audience within the consumer category is family caregivers. In both content and design, then, sites must Research was conducted during the first half of 2007, focus their attention on the needs of this audience. with findings presented to CHCF in June 2007 under the title “Choosing Long Term Care Services in California: Supporting Consumers and Providers.” “ onsumers and professionals have C Aims of this Report different levels of sophistication with Out of the research project’s findings and analysis, this regard to information needs and cannot report seeks to extrapolate lessons that can be applied not be easily served by the same Web site.” only by CalNHS.org but also by other online sites that — “Choosing Long Term Care Services in California: seek to guide consumers and professionals through the Supporting Consumers and Providers” thicket of information concerning long term care options. The primary lessons taken from the research include the need for site producers to: Family Caregivers as Primary Audience K Identify primary and secondary audiences; All aspects of project research that addressed the issue of usage indicated that consumers, rather than professionals K Understand the nature and extent of information or organizations, are the most frequent users of long term currently sought — and what is ignored — by care online sites. And of these consumers, it is family consumers; caregivers more than actual recipients of care who make K Attend to additional types of information wanted up the bulk — by some estimates 80 to 90 percent — of or needed by consumers; online site visitors. K Restructure sites in order to better meet consumer- Within the family caregivers category, however, there are support goals; and significant distinctions. Among these consumers seeking online assistance are: K Recognize the efficacy of marketing strategies to build demand. K “48 hours” caregivers, so designated because they seek information in the immediate aftermath of a family Recognizing Consumers as the Primary member’s health crisis; Audience for Online Long Term Care Sites K “Six months” caregivers, engaged in advance Many online long term care decision-support sites try planning for a family member’s approaching but not simultaneously to serve different segments of the long immediate long term care needs; term care universe: family caregivers doing advance planning; caregivers in crisis; consumers of both short K People seeking relatively short term skilled nursing term and long term care; referring professionals; facility care, rehabilitation facility care, and/or facility intake personnel and other facility or agency home health care for a family member about to be administrators; and public and private organizations that discharged from the hospital; and assess long term care services and providers. Evidence 2  |  California HealthCare Foundation K Those seeking long term custodial care, or long term they are physically or cognitively impaired, and thereby home health and/or community care. less capable of conducting an online search. Each of these types of caregiver seeks somewhat different Considering Long Term Care Professionals information, within different time frames. These as a Secondary Audience differences have implications for both the content and Research for this project revealed that the number of long structure of an online site, as neither one set of data nor term care professionals who make significant use of online one path to information can serve each of these caregiver decision-support sites is small compared to the number of categories equally well. consumers. Moreover, different categories of professionals use different aspects of the sites, and for different People in Need of Care Less Frequent Site Users purposes. Therefore, site developers need to assess how People who are themselves in need of care, or soon will their sites serve these secondary audiences. One approach be, are another set of consumers who use online decision- might be to collect and present certain information support tools. The project researchers found, however, intended to meet the specific needs of professionals, but that those in need of care use these tools much less to present it along a separate pathway from information frequently than family caregivers do. There are several primarily intended for consumers. This separate main reasons why actual care recipients visit online sites presentation might simultaneously serve two purposes: much less than do their adult children and grandchildren, making a site more useful to professionals, while making who make up the greatest proportion of family caregivers. it simpler for consumers to navigate toward the different One reason is generational: Older people are less familiar, information they seek. comfortable, and capable with online tools than are their younger family members. Another major reason is that Referring Professionals Rely on Their Own information about care options is often sought only after Information Circuits the person needing care is in crisis, which renders that One element of the secondary audience is referring person unable to engage in online investigation. Similarly, professionals: hospital and skilled nursing facility by the time many people need or consider long term care, discharge planners and ombudsmen, geriatric care Referring Professionals Seek Different Information Professionals who make placement referrals to long term care facilities and agencies tend to look for different kinds of online information than do consumers, and at present do not find that information on most decision-support sites. Referring professionals reported that they would make more extensive use of sites that presented information directly useful to them. Placement professionals are most interested in: • Number and availability of beds; • Aspects of ownership (e.g., non-profit status, corporate culture, ownership philosophy); • Staffing, including types, qualifications, tenure, and turnover of on-site staff (as opposed to mere staff-to-patient ratio); • Special services and amenities; • Types of insurance accepted; • Types of patients accepted (e.g., psychiatric, dementia, “difficult”); • Specialized medical services (e.g., IV antibiotics, wound care, rehabilitation); and • Specific contact information, including names of intake staff. Improving Decision Support Tools for the Long Term Care Consumer  |  3 managers, and long term care referral agencies. As a Consumers Use Sites as Entry Point into Search group, these professionals make a high percentage of for Long Term Care referrals to long term care facilities and home care The most common use of online sites by consumers is agencies. From this it might be inferred that they would simply as a starting point in the search for long term care. make extensive use of online information about long Geography, more than level of care or services offered, term care facilities and services. To the contrary, however, was most often consumers’ initial subject of entry. That research for this project disclosed that this group tends to is, usually the first and often the only question consumers rely almost exclusively on established, direct relationships asked of the site was “What is available near where I (or with local long term care providers, and so make little use my parent or family members) live?” Consumers also of online sites. commonly used sites to find out about the cost of, and availability of insurance coverage for, particular facilities Other Professionals Use Sites for Information and services. Through this combination of information Monitoring about geography and cost, consumers used the sites as Another segment of the secondary audience for online first-line filters to rule out many potential facilities and sites is long term care facility and home health care services, and thereby to narrow their choice to a small set agency administrators and intake staff. They use of alternatives. At that stage, most consumers believe that the sites to keep themselves informed about public the usefulness of online sites gives way to the need for and professional perceptions about their facility or personal visits to facilities or agencies under consideration, service. They also use site information for comparison and for other more informal kinds of information. purposes with other, similar facilities and services. In some instances, these administrators and staff use this Online Information on Quality Is a Secondary information when making facility or service adjustments. Consideration for Consumers Once they get past questions of geography and cost, some A final segment of this professional audience is public and consumers use online sites for secondary considerations. private agencies and organizations that study, synthesize, This includes information concerning quality of life in and present data and other information regarding residential facilities, such as: long term care, sometimes offering that information K Nature of the accommodations; to decision-making consumers but not making direct K Appearance of the facility and its residents; referrals. These organizations gather data from online sites K Food quality and choice; for their own information-presenting purposes. K Amenities offered by the facility; and Consumers Currently Seek Only Limited K Recreation opportunities. Information from Online Sites Designing an online long term care decision-support site Some consumers also look for site information pertaining requires an understanding not only of what information to staff: ratio, qualifications, turnover. And some seek could be offered but also of what the primary audience information regarding the languages and ethnicities of is looking for. They are not necessarily the same. The residents and staff, seeking compatibility for the person in researchers in this project found that consumers used need of care. existing online sites in only limited ways. In particular, consumers did not pay nearly as much attention to Quality of care is also identified by some consumers as quality of care data as site developers expected. an important second-line consideration. But consumers 4  |  California HealthCare Foundation usually consider this issue by looking at the specific give prospective consumers a quality of information not medical and therapeutic services offered by a facility or otherwise available. Moreover, consumers believed that agency rather than by examining comparative quality of such reviews could also alert them to issues or experiences care data. that they had not considered. However, their enthusiasm for such reviews was tempered by certain concerns. Some consumers were worried about the “subjectivity” Consumers Use Little Quality of Care Data of such opinions, and others were concerned that the Health care monitoring and advocacy groups have expended considerable energy in recent years gathering consumers who posted such reviews would tend to be and disseminating quality of care data regarding health only those expressing the most extreme — positive or care institutions and services, including long term care negative — opinions about their experiences. facilities. One of the significant findings of this research project, however, is how little consumers pay attention Another type of information consumers identified as to such quality data, including statewide comparative surveys, as presented by online decision-support sites. potentially helpful is an assessment tool that could guide Hardly any of the people in need of care consider them to the appropriate search criteria specific to their quality of care data, and only a small number of (usually family member’s particular care needs. This is congruent younger) family caregivers refer to this data online. with the opinions of long term care experts (see below), These findings point to the futility of simply piling more and more comparative quality data onto sites intended almost all of whom express concern that consumers have primarily for consumers, at least as those data are little understanding about the different levels of care currently presented. available, and about how to match their family member’s needs to an appropriate level. Information Consumers Want or Need Professionals’ Assessment of Information to Be Added to Online Sites Added for Consumers This project’s research included direct engagement There is no consensus among experts in the long term with consumers — both family caregivers and facility care field about the potential for consumers to make use residents — to determine the types of information they of extensive quality of care information at online sites. would want to see added to online decision-support sites. However, the experts interviewed for this project did The project also sought out assessments by long term care identify a number of areas in which they believe online professionals of the types of additional information they decision-support sites might provide more extensive believe would be useful to consumers, as well as types of information to consumers. information they would not recommend be prominently offered on the sites. Introduction to levels of care. A number of experts asserted that most consumers lack awareness of the Types of Information Identified by Consumers different types and levels of available long term care: to Improve Online Sites skilled and custodial nursing facilities; assisted living and When asked — in focus groups, focus group surveys, other residential facilities; home care; and community- and meetings with facility residents — what types of new based care. At a minimum, this lack of information information they would welcome at online decision- results in considerable waste of time and energy during support sites, a number of consumers named facility the search for care; worse, it can mean an inappropriate and agency reviews by other consumers. Reading the or unnecessarily costly care choice for a family member. experiences of actual residents and family caregivers could One of the early entry points for consumers, therefore, Improving Decision Support Tools for the Long Term Care Consumer  |  5 should be information on the different types and levels facility and home health care, both short and long term. of care that exist, and the needs and conditions that Consumers are also generally unfamiliar with complicated each type of care addresses. This might be abetted by a Medicaid (Medi-Cal in California) rules concerning tool than can match the consumer’s specific needs with eligibility and coverage for long term care. And of those the appropriate type and level of care available within a consumers who have long term care insurance, many are specific geographic area. uncertain about how benefits become activated and what they would pay. Online Information Is Heavily Weighted State/federal evaluation results. Experts are doubtful Toward Nursing Facilities about presenting consumers with too much detailed Many consumers begin their search unaware of the various types and levels of long term care that might be quality data. In particular, the experts believe that such available to them, or of how to determine which might data is often too difficult or overwhelming for consumers. be most appropriate. Information that introduces them However, they do believe that consumers should be to and explains these various types of care is crucial. So informed about reports of specific deficiencies regarding is supporting information that helps them decide among a facility or care agency, and about what the facility or the facilities or agencies that offer the appropriate level of care. agency has done in response to them. Unfortunately, online decision-support sites tend to have Global rating scored by experts. Many experts far more information concerning custodial care nursing interviewed for this project believed that consumers both facilities than about any other level or type of care. This may leave consumers adrift in their search for home- or wanted and could benefit from global ratings or other community-based care, or for assisted living or other indicators that compared facilities and agencies. Moreover, residential care. It may even unwittingly edge consumers they believed that consumers would respond positively toward choosing a nursing facility when another type or to ratings evaluated by experts, though a site should also level of care may be both more appropriate and more permit a consumer to drill down to the detailed facility or affordable. agency ratings on which the expert evaluation is based. Staffing information. Long term care facility Structural Site Changes to Better Meet administrators report that consumers frequently Consumer-Support Goals express interest in staffing issues but do not necessarily A significant part of this site review project focused on know what questions to ask. They tend to focus on the ways in which online information is presented. Focus staff-to-patient ratios. In the context of at-home groups and resident interviewees were asked for their care, staff-to-patient ratios are not comprehensible to responses to navigating CalNHS.org and other long term consumers. According to experts interviewed for this care Web sites, as well as selected sites for other services project, online sites should also provide consumers with and products. Similarly, long term care experts were asked information on types and qualifications of on-site staff, about consumer experience navigating their own Web tenure of the facility or agency administrator and director sites. And project investigators undertook a comparative of nursing, and turnover rate for the general staff. analysis of long term care consumer-support Web sites. Cost and coverage information. In addition to the The results of this research led to recommendations, cost of specific facilities and agencies, experts believe intended to facilitate consumer use, regarding structural that consumers need clearer explanations about payment changes to online decision-support sites. mechanisms and coverage. Many consumers have misperceptions about Medicare coverage for nursing 6  |  California HealthCare Foundation Reducing the Cognitive Load for Consumers Simplifying the Navigation System One of the project’s overarching lessons concerning Consumers using online decision-support tools are decision-support site structure was the need to reduce the likely to be familiar with relatively simple site navigation “cognitive load” for consumers. That is, research showed systems, such as those found on retail commercial that too often consumers were overwhelmed by a given sites. But they are probably neither experienced nor page. This was due either to the page carrying more comfortable with the kinds of search systems that health information than they could easily process in one step, care professionals regularly use. Therefore, decision- or to information being presented in a way that was too support site designers should consider navigation systems difficult for them to sort through. The consequences of that permit consumers to follow the path of their needs this cognitive overload included consumers misreading and concerns as they actually consider them, rather information, missing important information, or turning than asking consumers to grasp a logic pattern that is away from the site altogether. unfamiliar to them. To address the problem of cognitive overload, project researchers made several recommendations: “ onsumers who use the Internet are C Progressive access to information. Researchers found familiar with Web sites that permit them that consumers prefer to begin with broad information to flexibly sort and filter search results categories. This might seem to some site designers as an unnecessary step, but consumers appear to be more based on their specific needs. Such a comfortable beginning with such a preliminary stage feature would facilitate complex searches before moving progressively down to more detailed and [on long term care sites].” need-specific information. — “Choosing Long Term Care Services in California: Supporting Consumers and Providers” Clearer displays and explanations. Many consumers have trouble understanding or interpreting graphic displays of available services, comparative ratings, and benchmarks. This stems in part from differences among The project’s researchers identified a number of structural various ratings within the same site, even within the same elements that address the specific needs and capabilities of dataset, as well as from site to site. It also results from consumers searching for long term care decision support: poor explanation of the rating system being used. Experts Sequential disclosure. Most long term care decision- counsel that consumer testing can be of great value in support sites use a linear structure, with a wide array of overcoming these problems. information on each page. This makes it difficult for Adjustments in pitch of language. Sites must be careful many consumers to easily access the specific information to match their language to consumer levels of long term they seek; having to drill deeper and deeper into the site care literacy. Researchers propose that sites use a health to find what they are looking for increases the chance that literacy expert to help avoid industry jargon in favor of they will get “lost” along the way. Instead of this linear common, consumer-friendly terminology. design, information should be hierarchically organized in a “trunk/branches” structure that more closely resembles the cognitive map people use to organize large amounts of complex information. Improving Decision Support Tools for the Long Term Care Consumer  |  7 Flexible filtering search engine. A long term care Marketing Campaign to Build Demand decision-support search engine should permit multiple The old expression “All dressed up and nowhere to go” entry points to the data. This would permit users to has a parallel in the virtual world: a comprehensive, access the particular information they want from any level easy-to-use Web site that no one visits. This can happen on the site, and at any stage of the search process. Each if the site is constructed or written in such a way that page should incorporate graphic elements and contrasting search engines do not prominently display it. But even colors that both engage users and facilitate differentiation. addressing that problem has little effect on consumers who do not frequently use the Internet. A site can suffer Different opening paths. Experts have identified two inattention from these consumers if the site’s sponsors fail distinct sets of consumers who seek assistance from online to make good use of advertising and marketing avenues decision-support sites: “48 hours” emergency decision- beyond the world of virtual searching. makers who must find care during a crisis, and “six months” planners who have a longer lead-time for their Site sponsors thus need to invest in a comprehensive decisions (see “Family Caregivers as Primary Audience,” marketing campaign that includes various types of media. on page 2). Because the needs and processes of these two And the effort must be sustained — in order to influence groups can be quite different, researchers suggest that behavior, exposure to a message must be repeated. Also, from the site’s topmost level a different search path be consumer turnover is constant, with new people entering offered to each. the search for care as others conclude theirs. Consumer feedback function. Current long term care sites do not encourage or permit discussion among Search Engine Optimization consumers of long term care decisions or of individual Commercial sites are well versed in trying to optimize the providers. Yet this type of consumer feedback is relatively likelihood that Internet search engines will prominently common in other domains, both retail and public feature them. Given the proliferation of health care service (e.g., school selection). Despite some reservations, related sites, search engine optimization is becoming consumers interviewed for this project expressed interest increasingly important for long term care decision- in having comments from other consumers available on support sites as well. This requires attention, through a decision-support site. Such a feedback function might optimization experts, to both site language and structure. be enhanced by a system that vetted the comments to minimize inappropriate use. Web Advertising to Build “Equity” Advertising and other vehicles for garnering a mention “Key Words” Search Function on other related, trusted Web sites can be extremely Some consumers arrive at decision-support sites looking effective in reaching consumers who regularly use for information about only one kind of facility or service, the Internet. Such linking may send to the decision- or about one particular issue. Others are interested support site some consumers who might otherwise not in care options but have little information about types find it. And based on the original site’s willingness to of facilities and providers. A broad key words search provide the link, the decision-support site imports the function can help both sets of consumers. The key consumer’s sense of trust in that original site. words function can permit consumers to go directly to the material they seek without having to search through the site. And the function can locate the correct information paths for consumers who know only vaguely what certain facilities or services are called within the field of long term care. 8  |  California HealthCare Foundation Non-Web Marketing information may overwhelm consumers who are seeking Many consumers continue to use and depend on specific decision support. non-Internet forms of communication for most if not all of their information. This is particularly true for older Research conducted for this project suggests several consumers, who make up a large part of those searching ways — some having to do with content, some with for long term care for themselves or family members. It structure — for long term care online sites to address this is therefore important for sponsors of any long term care double bind. The first concerns the issue of audience. consumer decision-support site to use traditional media The project confirmed that the primary audience for channels to develop awareness of the site. Such traditional online long term care sites is consumers rather than marketing should follow two different paths: professionals, and in particular the adult children of those needing care. Researchers suggest that site sponsors shape Marketing to groups that influence consumers. One their information to fit the needs and capabilities of this marketing avenue for a consumer site is to develop audience, and that they further refine their presentation awareness of the site among individuals, groups, and to offer different search paths for those consumers organizations that influence long term care consumers. operating under crisis conditions and for those who are This would include nurses’ groups, hospital discharge engaged in longer term planning. planners, care managers, geriatric clinics, state and local ombudsmen, area agencies on aging, and patient Currently, consumers use online decision-support sites education centers. primarily as a starting point in their long term care Direct marketing to consumers. Sponsors of consumer search. Many consumers have little understanding of long decision-support sites should also consider direct term care options, and use online sites simply to find marketing to consumers in community settings. This local facilities. They also look at information on costs, can include generating television, radio, newspaper, and and some consider simple measures of quality of life and magazine publicity through press kits, press releases, care, but they make very limited use of quality of care and other marketing tools, as well as advertising in these data. Based on this current use and on consumer needs media. It can also include distribution of marketing remaining unfilled, the project’s researchers propose that materials to targeted organizations and locations such as online sites offer more extensive information on: types senior centers, public libraries, volunteer agencies, and of care; staffing; cost and coverage; and state/federal retail shopping centers. evaluation results, including deficiencies. The researchers also suggest global ratings scored by experts, as well as Conclusion some form of consumer feedback. Publicly available information concerning long term care facilities and services is rapidly proliferating. As the Project researchers also pointed to structural changes information becomes increasingly broad and complex, that would improve consumer site use. These are aimed the need to carefully organize and present it becomes at reducing the cognitive load consumers face, and at both more important and more difficult. Online long simplifying site navigation systems to ease access and term care sites offer consumers and professionals access reduce the risk of consumers getting “lost” in a site. to large amounts of such information quickly, efficiently, The proposed changes include progressive rather than and inexpensively. But unless carefully tailored, such linear access, broad beginning categories, multiple entry sites can doubly miss their marks: Information aimed at points, easily comprehensible benchmarks, and a reduced professionals may have few takers, while a large spread of emphasis on quality of care databases. Researchers also Improving Decision Support Tools for the Long Term Care Consumer  |  9 emphasize the importance of adjusting the pitch of site About the R e s e ar c h P art n e r s language to match consumer levels of long term care Howard B. Degenholtz, Ph.D., is associate professor of health literacy. policy and management, and associate director of research in the Center for Bioethics and Health Law, at the University of Finally, researchers emphasized that having the best site Pittsburgh. Dr. Degenholtz is a health services researcher who in the world is small consolation if no one knows about focuses on long term care and aging and whose work includes it. Sponsors need to market their site, not merely upon ongoing research on quality of life for nursing facility its launch but as an ongoing part of its operation. Such residents. marketing should include: search engine optimization; advertising on other related, trusted Web sites; traditional The HSM Group, Ltd., based in Scottsdale, Arizona, is a health care consulting business. It provides market media channels to groups that influence long term research, training, economic models, consulting, and care consumers; and direct marketing to consumers in strategic planning to many areas of the health care industry, community settings. including managed care organizations, health systems and hospitals, pharmaceutical manufacturers, medical products manufacturers, and health care trade organizations. They can be reached online at www.hsmgroup.com. Sam Boonin Consulting is an independent marketing consulting business in Oakland, California, that focuses on technology marketing. The company’s services include business strategy, go-to-market planning, messaging, and positioning, marketing program management, competitive analysis, and website content development. About the F o u n d at i o n The California HealthCare Foundation, based in Oakland, is an independent philanthropy committed to improving California’s health care delivery and financing systems. Formed in 1996, our goal is to ensure that all Californians have access to affordable, quality health care. For more information about the foundation, visit us online at www.chcf.org. 10  |  California HealthCare Foundation