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4. Implementing the Research and Action Agenda for Specific Populations

Much of the Informing Consumers About Health Care Quality conference focused on implementing the research and action priorities within the five task areas as they relate to four major consumer sectors:

  • Consumers employed in the public and private sectors.
  • Older consumers.
  • Consumers with special health care needs (e.g., chronic conditions, disabilities).
  • Consumers with special communication needs (e.g., related to culture and literacy).

Two sets of breakout sessions were held for each of these four sectors. Each session consisted of the following:

  • A brief presentation by the author of an AHRQ-commissioned paper on implementing the Research and Action Agenda for the relevant consumer sector.
  • Panelist reactions to that paper.
  • General discussion concerning the implementation of the Research and Action Agenda for the consumer segment in question.

In most cases, the panels included representatives of consumer groups, of provider organizations, and of sponsors of information (which may be individual purchasers, purchaser groups, foundations, or other entities). This chapter summarizes the highlights from these breakout sessions.

Segment 1. Consumers Employed in the Public and Private Sector

Suzanne Paranjpe, Ph.D., senior vice president of the Greater Detroit Area Health Council, who authored the commissioned paper on employed consumers, served as moderator for the breakout sessions focused on implementing the Research and Action Agenda for this segment.

In a brief overview, Dr. Paranjpe began by highlighting the key reasons for focusing on employed consumers and then provided a task-by-task review of the issues surrounding the implementation of the Research and Action Agenda for this consumer segment.

Select to access the paper by Dr. Paranjpe on the employed population.

Why Focus on Employed Consumers?

Most (65 percent) of the nonelderly insured population buy coverage through their place of employment. Thus, this group of individuals is an obvious one to focus on in formulating strategies to make consumers more effective users of information on quality. It is important to recognize, however, that the prevalence of employment-based coverage varies by race, income, and geography.

Task 1. Educating and Motivating Consumers to Use Information on Quality

For employed individuals, the choice of health plans occurs only after the employer first makes a decision about which plans to offer employees; employees then choose from among these plans. Many employees, especially those in smaller firms, have no choice of plans because their employer offers only one. But these individuals still need quality information because they must choose providers.

To get employees to use information on quality, the employees must:

  • Understand that quality varies across plans and providers.
  • Realize that there are other important measures of quality besides those relating to the amount of services delivered.
  • Be convinced that the quality data comes from credible sources and that the measures are used in consistent ways. Consumers may not, for example, trust quality information from their employers because they often think the employer's principal concern is cost.

In addition, the information has to be what people want to know, available to them when they want to know it, and presented in a user-friendly format.

Task 2. Improving the Supply and Delivery of Consumer-Oriented Information on Quality

Purchasers have played a lead role in providing employed consumers with information on quality, but there are key limitations to the purchaser approach. The measures or methodologies used by different purchasers may vary, resulting in the same health plan or provider group receiving different scores on seemingly similar measures. In addition, purchasers cannot use a one-size-fits-all approach to information on quality. Rather, the information needs to be tailored to reflect differences among individual consumers, including taking into account the cultural context and the varying abilities of consumers to comprehend information on quality.

Task 3. Developing Consumer-Oriented Quality Measures

Quality measures must not only be able to assess quality among all plan types, but also be discriminating enough to show differences among plans. For example, if all of the plans meet a benchmark, the benchmark is not helpful to consumers in choosing among the plans. A particularly difficult challenge is to develop measures of performance that can differentiate among providers.

Task 4. Identifying Market Characteristics and Purchasing Strategies That Support Consumer Use of Information on Quality

Even if consumers see information on quality, they still may not actually use it in making a choice of health plans or providers. In choosing health plans, consumers look first to ensure that their doctor is in the plan. After that, they tend to consider price, treating health care as a homogeneous commodity with respect to quality. Even if they are concerned about quality, they tend to believe that their own physician is good and that their local hospital is in fact best. Finally, when seeking advice, they tend to turn to friends and family and other word-of-mouth sources, rather than to hard data on quality.

Task 5. Evaluating the Impact of Consumer Information Efforts

Purchasers often do not invest the resources necessary to determine whether their consumer education efforts are effective. This lack of investment is understandable, because health care is not a core business for most purchasers; consequently, they have limited resources and staff expertise to devote to the task of evaluation. The limited capacity of purchasers to focus on evaluation creates a strong case for the development of a standardized framework that can be used across purchasers for evaluating how consumers use quality information.

Panel Comments on the Paper

Three panelists offered their perspective on Ms. Paranjpe's remarks and on the commissioned paper.

The Consumer Perspective

Peter Benner, M.A., executive director of Council 6 (Minnesota) of the American Federation of State, County, and Municipal Employees (AFSCME), provided the consumer perspective. He began by noting that Minnesota's 45,000 state employees are surveyed every other year to collect information on the performance of both health plans and provider care systems.

First and foremost, Mr. Benner concurred with Ms. Paranjpe, quality information is not relevant to the large number of people who do not have a choice of health plans. In many rural areas, people do not even have a choice of providers. The same may be true in some suburban areas where health plans have exclusive arrangements with one of the large provider systems in the market.

Second, in considering ways to improve quality, he said, it is important not to forget the basic problem of access. For example, one effort under way in Minnesota is designed to improve access by getting delivery systems to offer same-day appointments. Achieving this objective would substantially improve quality.

Third, one of the assumptions underlying the movement toward producing better information on quality is that people will move to different providers or health plans in response to evidence of significant differences in performance, and that this potential shift in market share will be a strong incentive to improve quality. But this assumption may not be valid, not only because many people do not have a choice of plan or provider, but because many health plans or providers to not have the capacity to absorb a large influx of new enrollees.

Finally, Mr. Benner noted several challenges that employers face, particularly with respect to measuring performance at the provider level (which is what consumers really care about, since most of the plans contract with the same provider groups). In his market, the purchasers believe that they know how to measure quality in the approximately 400 primary care clinics in the area, and that they worked out the political impediments to conducting such measurement. But generating such information remains expensive, and thus far the money necessary to fund the effort has not been raised (a problem that is likely to exist in other markets as well). Another challenge relates to sample size, since no single employer is big enough to have enough experience to draw statistically valid conclusions about performance differences at the provider group level. Thus, purchasers have to find ways to use aggregated data in a collaborative fashion. It is also important that standardized, clinic-level measures be developed so that it is possible to compare quality within and across local areas.

The Sponsor Perspective

Christopher Queram, M.H.A., CEO of the Employer Health Care Alliance Cooperative, Madison, WI, offered the sponsor perspective. In setting the context for his remarks, Mr. Queram noted that his organization's emphasis is on dealing with delivery systems rather than health plans.

With respect to Task 1 of the Research and Action Agenda (educating and motivating consumers to use information on quality), Mr. Queram noted that people generally perceive the quality of the health care they receive as high, but in making that judgment, they tend to focus on the quality of the facility or the friendliness of the providers. But it is possible to show people that other quality measures are important; with proper educational efforts, they will acknowledge the need for better information.

Related to Task 2 (improving the supply and delivery of information on quality), Mr. Queram disagrees somewhat with the view that purchasers cannot be credible sources of quality information. He believes that consumers are willing to rely on organizations (like his) that represent a consortium of purchasers as a source of objective information. People tend to remember information supplied by their employers.

Related to Task 3 (improving the supply and availability of quality measures), purchasers need to coalesce around a common set of measures that will make it possible to compare quality within and across market areas. Moving in this direction will help to create greater accountability on the part of providers.

The Provider Perspective

Robert Margolis, M.D., CEO and managing partner of HealthCare Partners Medical Group (which includes 2,500 physicians practicing in Southern California), offered the provider perspective. His experience leads him to be optimistic about the prospects for measuring quality at the physician group level, but he believes the industry is a long way from being able to move to the next stage of being able to assess the performance of individual doctors. Yet this type of measurement must ultimately occur, as there is great variability in performance among individual doctors. Unfortunately, the practice of evidence-based medicine remains the exception rather than the rule among providers.

Dr. Margolis spoke about Task 1 from the perspective of educating and motivating providers—rather than consumers—about the use of quality information. In his view, persuading providers that they have a business interest in attending to quality is crucial. One of the difficulties is that, even though there is pronounced variation in quality among doctors, consumers trust their own practitioner. This high level of patient confidence means that physicians do not feel a need to improve the quality of the care that they deliver. The good news is that a lot of information is now available to physicians to help them improve the quality of their medical practice; the key is finding ways to ensure that physicians use this information.

With respect to Tasks 2 and 3 (improving the supply and delivery of information on quality and the supply and availability of measures), quality measurement that focuses on health plans (such as HEDIS [Health Plan Employer Data and Information Set] measures) is not very useful in market areas such as California where most tasks that influence quality are delegated to physician groups. The emphasis needs to be on measuring quality at the physician group level, including measures related to providing preventive services and managing chronic illness. The people doing the measurement should look to physicians as a source of advice about how best to accomplish this objective.

With respect to Task 4 (market characteristics to encourage use of information on quality), one way to encourage use of data for quality improvement is to establish pay-for-performance systems for providers. For example, one initiative in the Southern California area sets aside 2 percent of premiums to reward physicians for high-quality performance in providing preventive care and treating chronic illness. Although some physician groups will receive nothing, the majority will receive some reward, and the top quartile will receive a significant payout. The result could be to encourage consolidation of provider groups, as low-scoring groups merge with high performers.

Implications for the Research and Action Agenda

Following the panel presentations, panelists and conference attendees focused on identifying and discussing specific strategies, priorities, opportunities, and obstacles related to implementing the Research and Action Agenda for consumers employed by the public and private sectors.

Recommended Action Steps

Dr. Paranjpe highlighted a series of recommended action steps related to the employed population:

  • A major national awareness campaign is needed to get the message out on the importance of quality. The campaign should include sources of information on quality, as well as education about how to use such information. The campaign should also target purchasers, especially small and medium-sized employers that tend to focus primarily on costs.
  • A leadership group consisting of purchasers and other stakeholders needs to "take a leap" by focusing on two or three measurable processes, much as the Leapfrog Group is currently doing.
  • Consensus needs to be developed on a standardized data set.
  • Providers need to buy-in to this process, as they are an important, trusted intermediary for getting the message on quality to consumers.
  • A mechanism must be developed for easily sharing lessons about what does and does not work with respect to providing consumers with information on quality.
Key Research Questions

Critical research questions include the following:

  • Understanding the economic case for quality for purchasers, including hard data on the impact on productivity, retention, and absenteeism.
  • Understanding the business case for providers and for the community at large (in terms of the impact on community health).
  • Examining the impact of different kinds of messages, including not only the content of the message, but also delivery mechanisms, timing (e.g., the relative importance of different teachable moments), and messengers.

The key question is—what approaches work best with which consumer segments?

  • Examining the importance of financial and nonfinancial incentives in getting consumers and providers to use information on quality.
  • Determining how measurement might vary, if at all, depending upon whether measurement is being done to assist consumers in selecting plans and providers, or to assist plans and providers with quality improvement efforts. For example, consumers may not be as interested as providers in measures of clinical effectiveness.
Challenges for the Future

Dr. Paranjpe highlighted a number of challenges for the future, but cautioned that these should in no way be construed as reasons to abandon the effort:

  • Getting health plans, providers, and other stakeholders to recognize that today's costs will turn into tomorrow's savings.
  • Convincing key stakeholders (including consumers) to abandon their long-held belief that broad choice is the same as high quality.
  • Raising the funds needed for the effort.

Return to Contents

Segment 2. Older Consumers

Shoshanna Sofaer, Dr.P.H., the Robert P. Luciano Professor of Health Care Policy in the School of Public Affairs at Baruch College, City University of New York, authored the commissioned paper on elderly consumers, and served as the moderator for the breakout sessions focused on implementing the Research and Action Agenda for this segment.

In her overview, Dr. Sofaer reviewed the distinctive characteristics of older Americans that affect the dissemination and use of quality information, and highlighted the important challenges in implementing the Research and Action Agenda for this segment.

Select for the paper by Dr. Sofaer on older consumers.

Distinctive Characteristics of This Population

Older Americans are a growing portion of the population, presently representing 35 million individuals. They are different from younger Americans, not only due to their age, but also because of the cohort that they belong to—in other words, the period of history through which they have lived has affected their views and behaviors. Older Americans are very diverse today and are becoming even more diverse, especially from an ethnic perspective.

Seniors use many more health care services than do nonseniors; these services are critical to maintaining their functional status and quality of life. As a result, they have a greater interest in health care quality. Unfortunately, however, sensory, cognitive, and mobility impairments can serve to limit the ability of seniors to access and use information on quality, thus making many of them dependent on family, friends, and other caregivers for information and support. In addition, significant literacy limitations (apart from cognitive impairments) can make it more difficult for seniors to understand text, numbers, and statistics and to navigate charts, graphs, and documents.

Challenges in Providing Information on Quality

Dr. Sofaer laid out a number of challenges in implementing the Research and Action Agenda for seniors. These include the following:

  • Motivating seniors to incorporate quality concerns into decisionmaking.

    Today most seniors make decisions based on costs, covered services, and physician recommendations. To encourage consumers to incorporate quality into their decision making, there must be consensus on the action messages needed to reach and activate this audience in an ongoing multi-media campaign. Those who design and disseminate products must recognize the diversity of the audience with respect to such factors as culture, abilities, and who they trust, each of which may vary based on age, ethnicity, and other factors.

  • Providing quality information on what is most salient: providers and facilities.

  • Simplifying, shortening, and disaggregating data presentations.

    Dr. Sofaer believes that much work needs to be done in this area; today's 32-page booklets simply will not work. Part of the task involves targeting the appropriate material to the appropriate subsegments of seniors.

  • Increasing use of nonprint media such as television, audio tapes, and slide presentations.

    Dr. Sofaer noted that in some cultures, oral communication is much more important than written communication.

  • Working with family members, friends, and caregivers as intermediaries.

    Much work needs to be done in learning more about these individuals, and in developing and disseminating products for these individuals, who are as diverse as the seniors themselves. Dr. Sofaer commented that, while seniors are tremendously dependent on their advisors, they also have a need to be independent. Although they may ask for opinions, they will not always follow the advice given.

  • (Most important) Developing a sustainable infrastructure for staff and volunteers to provide hands-on, in-person help to people on Medicare.

    The first step is to identify the full range of agencies—such as State Health Insurance Assistance Programs (SHIPs), Medicare Peer Review Organizations (PROs), patient advocacy groups, aging network agencies, and others—that can help, and then to identify the appropriate roles for each. These agencies must be provided with the tools and resources they need to fulfill these roles.

Panel Comments on the Paper

Three panelists offered their perspective on the Dr. Sofaer's remarks and on the commissioned paper.

The Consumer Perspective

Susan Kay, project manager for the Coalition to Monitor Medicare Managed Care of the Western Reserve Area Agency on Aging in Cleveland, Ohio, provided the consumer perspective. She began by noting that her experience in the Cleveland market is one in which consumers tend to be very loyal to a particular hospital and its physicians. (Physicians in Cleveland tend to align themselves with one of the two major hospital systems.) In fact, a major initiative to provide consumers with information on the relative quality of hospitals fell apart due to the power of one of the major hospital systems.

Consumer use of information on quality depends upon three factors:

  • The importance of choice to the individual consumer.
  • Whether the consumer can afford the care he or she wants.
  • Individual circumstances, such as the presence of a chronic illness (which might lead a consumer to seek out a discussion group among other individuals with that condition).

Ms. Kay has found a number of strategies that work for reaching seniors in this environment:

  • One effective campaign—known as "Mrs. Johnson and the Advocate Angel"—taught patients to speak up with providers during office visits. By organizing their thoughts beforehand, seniors were able to become more informed consumers.
  • Peer-to-peer counseling also proved to be quite effective in reaching seniors, as did the use of a wide variety of media, including television, newspaper, and health fairs. Radio, however, was completely ineffective in reaching seniors.
The Sponsor Perspective

Robert Adams, M.S.W., project officer for the State Health Insurance Assistance Program Grant at HCFA in Baltimore, provided the sponsor perspective. In an effort to meet HCFA's goal of providing reliable, objective, and consistent information to seniors, his organization has provided $26 million in grants to organizations operating under the SHIP for coordination of an effective counseling program for this population. Although much work remains before all 53 programs have a uniform approach, SHIP organizations provide relevant messages to individuals in a market area by translating complicated information into something comprehensible and useful. HCFA's challenge is to ensure that, in performing this task, SHIP organizations also present reliable, objective information.

SHIP organizations rely on 12,000 volunteers. Not surprisingly, working with volunteers creates its own set of challenges, including high turnover and concerns about the accuracy of the information provided. But these volunteers—who are primarily seniors themselves—provide the empathy, compassion, and caring that only a peer can offer.

In some respects, SHIP organizations are at the top of the pyramid as a source of information for seniors, who tend to contact their local SHIP organization after feeling unsatisfied with the amount of time and attention they received when trying to get information elsewhere. SHIP organizations now serve roughly 2,000,000 seniors each year, up dramatically from 600,000 in 1992. But most of the information exchange does not directly relate to quality. In 1992, Medigap coverage was the biggest topic of conversation, while today seniors are still struggling with understanding the changes to the Medicare program brought about by the Balanced Budget Act of 1997. In general, the complexity of the Medicare system (e.g., Part A versus Part B, Medicare+Choice, Medigap coverage, retiree coverage) has become a patchwork quilt that is very difficult to explain to seniors, and it is no surprise that SHIP volunteers spend most of their time simply explaining the "ins and outs" of the program to seniors. Looking ahead, the leaders of SHIP organizations hope to broaden their message by incorporating quality issues into interactions with seniors.

The Plan and Provider Perspective

Kathryn Coltin, M.P.H., director of external quality and data initiatives for Harvard Pilgrim Health Care in Boston, offered both the plan and provider perspective.

The Conventional Wisdom with Respect to Information on Quality

Ms. Coltin began by reviewing the conventional wisdom on the role of information on quality in the marketplace. This view suggests that such information will lead to more informed decision making among consumers, which will in turn encourage market competitors (e.g., plans and providers) to improve quality, resulting in better health and lower costs.

She noted that some data on quality is presently available through HEDIS. A portion of this information is relevant to seniors, such as measures related to certain screening services and disease-specific measures related to chronic illnesses such as heart disease, diabetes, and hypertension. Ms. Coltin cautioned, however, that this segmented approach means that many different measures are needed to ensure that at least one measure is relevant to the majority of older consumers. Other data, such as that available through CAHPS®, may be relevant to the majority of seniors, as they measure consumers' experience with a variety of dimensions of health care, including getting needed care, getting care quickly, interpersonal skills of physicians, and customer satisfaction. But there is no way to know if strong performance on these measures actually results in better health or lower costs. Finally, other, market-based surveys by private companies tend to add to the confusion.

An Alternative Scenario

Ms. Coltin is not convinced that the conventional wisdom is correct. She believes that, even if information on quality leads to more informed decisionmaking, producing such information raises costs for all plans. Such expenditures must be justified. Yet in her view, more informed decision making by consumers could lead to adverse selection by these consumers, and therefore to higher costs for the best health plans. This phenomenon, in turn, could lead to market failures among the best plans, a decline in the quality of care and in the health status of consumers, and ultimately to higher costs for these same consumers.

To preserve healthy markets and healthy members under this scenario, payment structures must recognize the efforts of plans and providers to keep patients healthy. Risk-adjusted payment systems are required to protect the health plan from the risks of adverse selection. Incentives and rewards (e.g., greater market share or higher payments) must be made available for providing better care. In addition, information on the quality of care provided to consumers must be consistent. While the efforts of the National Quality Forum are a step in the right direction, it remains difficult to get organizations to relinquish their proprietary measures and information. Finally, purchasers should provide incentives to consumers who use information on quality. For example, employers could contribute a higher percentage of the premium to employees who choose higher-quality plans.

What Can Be Done Better?

Ms. Coltin closed by highlighting how she believes providing information on quality to consumers in general—and to seniors in particular—can be done better:

  • Promote the use of information on plans and providers more aggressively, to justify the regulatory burden placed on these organizations.
  • Create consistency of measurement across health plans, to reduce the levels of confusion caused by conflicting information.
  • Inform consumers about valid, credible sources of information on the relative quality of plans and providers, and educate them about the measures used.
  • Reward high performance by plans and providers, and the selection of the best plans by consumers.

Implications for the Research and Action Agenda

Following the panel presentations, presenters and conference attendees focused on identifying and discussing specific strategies, priorities, opportunities, and obstacles related to implementing the Research and Action Agenda for elderly consumers. Three central issues were addressed:

  • Prioritization of actions within the Research and Action Agenda as they relate to elderly consumers.
  • Determination of critical research questions that still must be answered.
  • Identification of the most significant challenges for the future.
Priorities Within the Research and Action Agenda

The discussion identified the following action priorities:

  • Identify the key messages that need to be communicated, as well as the key behaviors being asked of both consumers and their families and friends.
  • Train a wide range of intermediaries, including individuals and organizations with specific ties to seniors. Because health care quality is not high on the agenda of many of these intermediaries, it is critical to figure out what about quality needs to be communicated to these intermediaries so that they can in turn use their influence to effectively get the message to seniors.
  • Identify the teachable moments, whenever and wherever they may occur, and then design interventions to take advantage of them. Without question, sending out thick booklets once a year is not effective. The key is to find those times—such as right before joining Medicare, the time of a new diagnosis, or perhaps a Medicare+Choice plan's withdrawal from the market—when an elderly consumer is in fact interested in looking at information on quality.
  • Work on providing information that is of relevance to all levels of the consumer—provider interaction, including not only in the choice of plans, providers, and treatments, but also to help the senior to navigate the system.
Research Questions to Be Addressed

Key research questions that need to be addressed include the following:

  • What resources will it take to do this right? Can we afford it? Where will the money come from?
  • What are the most critical pieces of contextual information (e.g., about how the Medicare program works) that must be provided to seniors before information on quality will make any sense?
  • Who specifically are these "family and friends" who have so much influence over seniors? What is their role, and what are their needs in fulfilling that role? How do we support them?
Most Significant Challenges for the Future

Looking ahead, the following were highlighted as key challenges:

  • How can the Medicare program be simplified? The system today is so complex that many seniors spend substantial time trying to understand it and make it work for them.
  • How can measures be refined to the level of the provider organization (e.g., medical groups and hospitals) and eventually to the level of the individual provider?
  • How can elderly consumers be convinced of the benefits of getting information on quality? How can they be taught that the physician is not the paramount authority on all issues?

Return to Contents

Segment 3. Consumers with Special Health Care Needs

Christina Bethell, Ph.D., M.P.H., M.B.A., senior vice president for research and policy at The Foundation for Accountability (FACCT), Portland, Oregon, authored the commissioned paper on consumers with special health care needs, and served as the moderator of the break-out sessions that focused on implementing the Research and Action Agenda for this segment of consumers.

Brief Overview of the Paper

In a brief overview of her paper, Dr. Bethell began by defining the segment of consumers with special health care needs, and then made the case for focusing on this subset of the population. She concluded by highlighting the key issues related to implementing the Research and Action Agenda for these consumers.

Select for the paper by Dr. Bethell on consumers with special health care needs.

Who Are People with Special Health Care Needs?

A Definition

People with special health care needs generally require health and health-related services of a type or amount that is beyond those required by people generally, and/or experience current functioning and/or quality of life consequences, including reduced mobility, sensory impairment, or intellectual limitations. In addition, the health condition causing the service need and/or functional limitation is typically due to the presence of an ongoing physical, mental, or developmental condition lasting or expected to last for at least 3 to 12 months. This condition may or may not be latent or active, have a formal diagnosis (e.g., diabetes and depression are often not diagnosed), or have a clear impact on functionality or service use.

Prevalence Estimates

A very large proportion of the population has a special health care need. Dr. Bethell estimates that 110 million Americans meet the definition highlighted above, and another 90 million Americans are family members of those with special health care needs. Not surprisingly, these individuals account for the vast majority (roughly 80 percent) of health care spending in the United States.

Based on a variety of different sources, Dr. Bethell estimates that between six and eight million children have special health care needs. Some sources suggest that almost one in five children have special health care needs, with perhaps one-quarter to one-third of these children having activity limitations due to the condition. Prevalence is higher among low-income children and children over the age of 10 years.

Sources indicate that more than three in 10 adolescents have special health care needs, with respiratory allergies, asthma, and headache being the most common problems. And finally, somewhere between 35 percent and 50 percent of adults have a special health care need, with prevalence being higher for those over the age of 65 (65 percent) and the age of 80 (80 percent or more).

Why Focus on People with Special Health Care Needs?

Dr. Bethell highlighted two reasons for targeting this population with information on the quality of health plans and providers:

  • Greater relevance and receptivity.

    People with special health care needs require care more frequently and for longer periods of time. They also need different types of care than the general population. As a result, they make more frequent and more complex health care decisions. In short, health care has a bigger impact on their lives.

  • Quality and cost incentives.

    There is a clear need to improve the quality of care provided to individuals with special health care needs. A variety of studies suggest that the care they receive is only 40 percent to 60 percent of "optimal" care (as defined by evidence-based guidelines). Better quality care should also result in a reduction in preventable events and costs. In addition, these consumers are more sensitive evaluators of quality.

Key Issues Related to the Research and Action Agenda

Dr. Bethell highlighted the key issues of relevance to consumers with special health care needs within each of the five task areas of the Research and Action Agenda.

Task 1. Educating and Motivating Consumers to Use Information on Quality

Consumers with special health care needs tend to already be very interested in information on quality at both the plan and provider level. And, although they may suffer from many different conditions, there is a surprising commonality to the quality issues these consumers are concerned about, including communication and partnering with their providers (e.g., shared decision making) and receiving appropriate care. They are also interested in the results of care, although these concerns tend to vary by condition.

But even though these consumers are interested in information on quality, there is still an important need for national awareness campaigns such as those recommended in Task 1 of the Research and Action Agenda. To build demand for and support use of quality information, this campaign must be based on messages that motivate, and be targeted to the right individuals. In short, the targeting, timing, message, and messenger all matter.

Tasks 2 and 3. Improving the Supply and Delivery of Consumer-Oriented Quality Information, and the Supply and Availability of Quality Measures

While there is not a lot of information on quality available today for this population, there are some encouraging signs. HEDIS measures cover roughly 25 percent of the insured population (and 75 percent of those in HMOs), and include measures on chronic illnesses such as diabetes, asthma, depression, coronary artery disease, and hypertension. By 2003, HEDIS will incorporate noncondition specific CAHPS® measures and composite scores for children.

Information on the quality of physicians is also beginning to emerge. Several Web sites provide basic information about individual physicians, with some even allowing the opportunity for a personalized and detailed patient self-assessment of patients' needs and preferences. Finally, national information on quality is beginning to emerge from projects such as the Robert Wood Johnson Foundation (RWJ)-FACCT Strategic Indicators Project, the RWJ-RAND QA Tool Project, and new initiatives coming out of the Institute of Medicine and the National Quality Forum.

Key issues related to Tasks 2 and 3 include the following:

  • Determining the appropriate audience to target.
  • Ensuring the proper scope and focus of quality measures, including the appropriate mix of general versus condition-specific measures.
  • Leveraging existing methods.
  • Determining the best ways to help consumers advocate for the care they need based on their unique health situation.
  • Developing and using new methods and technologies for generating and distributing quality information relevant to this consumer segment.

Task 4. Identifying the Market Characteristics and Purchasing Strategies to Suppose Use of Information

The set of choices for people with special health care needs is very different than that for consumers without such needs. Consumers with special needs tend to rely on specialized services that are not widely available from providers, and thus these consumers may be limited in whom they can choose to receive such services. Maintaining continuity of care with these providers—even if they are not the best—is important (and related in the consumer's mind to quality).

The lack of choice and importance of continuity of care must be considered when information on quality is provided as a means of encouraging this segment of consumers to choose high-quality providers. One must also consider whether there is a role for government in ensuring quality in circumstances under which a patient may not want or be able to switch plans or providers.

Purchasers may also play an important role in ensuring quality for consumers with special health care needs. Issues related to contracting, payment structures, incentives, and partnerships between purchasers and plans/providers are important.

Task 5. Evaluating the Utility and Impact of Consumer Information Efforts

Key questions related to evaluating the utility and impact of consumer information efforts include the following:

  • What are the most important goals regarding quality information for people with special health care needs?
  • What is the burden of proof for the value of such information?
  • What evaluation scenarios are most promising?

Panel Comments on the Paper

Three panelists offered their perspective on Dr. Bethell's remarks and the commissioned paper.

The Consumer Perspective

The consumer perspective on this topic was offered by Nora Wells, M.S.Ed., who serves as the national coordinator of research activities for Family Voices, a grass-roots network of families headquartered in Boston, MA, that seeks to get needed information to families caring for children with special health care needs. She began by noting that finding specialized providers of pediatric services is especially challenging for families that care for children with special health care needs. Because there is inconsistency in providing services to these children, there is a tremendous need to measure performance, expose variation in performance, and improve care for all patients (not just children with special needs).

Ms. Wells highlighted a number of issues that every family of a child with special health care needs wants to know about:

  • Who are the providers for children with special health care needs, and what are their capabilities?
  • How can one access care, especially care provided by pediatric subspecialists, home care providers, and mental health specialists?
  • How have children with special health care needs fared in a particular plan, or with a particular provider?
  • How well has care been coordinated for these children with complex needs who receive care in a complex system? How well does the health plan work with the multiple systems of care needed to provide high-quality care?
  • What kind of choices do these children and their family members have?

As Dr. Bethell noted, many families do not believe they have much choice with respect to health care decisions. In some instances, parents forfeit their own choice in order to join the one plan or provider group that offers the special service(s) that their child needs. In other instances, so much effort has been invested in building a relationship with a particular plan or provider that the family will not want to switch, even if the care being provided is suboptimal.

Not surprisingly, Ms. Wells has found that individuals and families with special health care needs tend to be more interested in quality than is the average health care consumer. They naturally think about the ways to improve care for themselves and others in the future. Consumers with special health care needs tend to believe that they can actually make a difference in the quality of care offered by plans and providers.

Given these issues, it is important for individuals who promote the use of information on quality by this population to consider the following:

  • When reporting performance, consider whether to include the broader population, or limit it to performance related to those with special needs (or both). The use of resources for this population has important implications for all consumers, as spending additional dollars on those with special health care needs leaves less resources for everyone else.
  • How accurate is the information provided to consumers?

Ms. Wells urged a special focus on eliminating misinformation.

  • Measure the quality of home care services, which is especially important for the elderly.
  • Promote the development of risk-adjusted payment systems, which are essential to avoiding adverse selection.

Finally, Ms. Wells highlighted a handful of research priorities related to this population:

  • Developing specific quality measures for consumers with special health care needs.
  • Generating estimates of the costs of caring for this population.
  • Increasing knowledge about the role of the family in providing care to this population.
The Sponsor Perspective

Alice Lind, R.N., M.P.H., a nurse consultant advisor for quality management with the Washington State Medical Assistance Administration (WSMAA) in Seattle, WA, offered the sponsor's perspective on the topic. She focused on highlighting the lessons learned from a WSMAA initiative that ranked the quality of health plans in providing services both to children at large and to those children with special health care needs. (FACCT partnered with WSMAA on this project.) The findings suggest that some plans are very close in their quality of performance for both populations, while a few plans appear to be better than the rest in serving children with special needs. In addition, a few plans demonstrated "alarming gaps" in performance, with markedly worse scores for children with special needs, particularly with respect to providing access to care in a timely manner and coordinating care. WSMAA has been working with these latter plans to help them improve.

Ms. Lind highlighted three critical areas in which the project failed to fully meet expectations. The agency plans to continue to refine the survey and other aspects of the report over time so as to address these shortcomings:

  • Timing of the report's release.

    While the report is traditionally released to coincide with open enrollment at year's end, roughly 25 percent of consumers will need to change health plans earlier in 2001 due to plan withdrawals from the market.

  • The message.

    The report emphasized the importance of considering quality in selecting plans, and noted that some plans do better than others in terms of serving children in general and children with special needs in particular. As a government agency, WSMAA could not be more explicit in rating overall performance of individual plans.

  • The measures.

    The report utilizes traditional CAHPS® measures, presenting results using a three-star system. The agency is currently considering whether to use absolute numbers as a replacement for or complement to the star-rating system. WSMAA is now working with plans and other stakeholders to try to gauge (and enhance) their comfort levels with this approach.

The Provider Perspective

Steven Christianson, D.O., M.M., serves as medical director for Visiting Nurse Services of New York (VNSNY), an organization that provides what Dr. Bethell described as "home care at the extreme." VNSNY serves over 20,000 people (including 2,500 frail elderly) daily in their homes, offering both skilled nursing and home health services.

Dr. Christianson offered the provider's perspective on the implications of the Research and Action Agenda for this population, focusing in particular on home care services.

Task 1. Educating and Motivating Consumers to Use Information on Quality

Tailoring information to this population is a huge issue, as many consumers with special needs lack the skills needed to use comparative information.

Task 2. Improving the Supply and Delivery of Consumer-Oriented Information on Quality

VNSNY uses outside contractors that have developed their own performance measures for home care. He sees a need to develop standardized reports on the comparative quality of different providers.

Task 3. Improving the Supply and Availability of Quality Measures

Home care providers must deal with a complex regulatory structure and process that includes a multitude of regulations related to licensing and other issues. VNSNY already has access to a variety of data on home care providers, information that is typically shared with physicians (who tend to make choices on behalf of their patients) and regulators. VNSNY and other similar organizations are not accustomed to sharing this type of information directly with consumers. At present, moreover, there is no standardized set of performance measures available for home health.

Task 4. Identifying the Market Characteristics and Purchasing Strategies That Support the Use of Information on Quality

The major obstacle to getting consumers to use information on quality is in identifying the appropriate level of understanding among consumers and their caregivers, and then tailoring the information in a way that makes the consumers want to use it. The typical long-term care resident has three comorbidities and is in need of a complex set of services. Measuring the quality of those services requires multiple measures. At the same time, however, many of these consumers have cognitive impairments that make it difficult for them to understand and make use of complex information. The key, therefore, is to understand how to best communicate with this type of consumer and his or her caregivers, rather than tailoring information to physicians or discharge planners who are making decisions on the patient's behalf.

Implications for the Research and Action Agenda

Following the panel presentations, presenters and conference attendees focused on identifying and discussing specific strategies, priorities, opportunities, and obstacles related to implementing the Research and Action Agenda for consumers with special health care needs.

Dr. Bethell summarized this discussion by reviewing each of the task areas, highlighting the priorities with respect to both needed actions and research.

Task 1. Educating and Motivating Consumers to Use Information on Quality

A national education campaign targeted at this segment is clearly needed to help legitimize the role of the consumer with special health care needs. The ultimate goal is to change the balance of power to favor the consumer. Successfully orchestrating this campaign will require close partnerships with consumer organizations and multiple channels of communication. The message must emphasize the truth—that many consumers with special needs are not getting optimal care.

Along with the national awareness campaign, Dr. Bethell highlighted the need for the development of tools or other strategies that will allow consumers with special health care needs (and/or their caregivers) to understand and judge the quality of care, so that they can act as advocates for themselves (and/or their clients) to ensure that the care that is received is appropriate to the consumer's particular situation.

Before implementing these two actions, the following research questions should be addressed:

  • Messages promoting both "balance of power" and "behavior change" must be tested with consumers.
  • Research is needed to determine who is the best messenger for delivering the truth about the current quality of care.
  • Evaluation and dissemination of information on which interventions do and do not work for this population must be undertaken so that consumers can act as advocates for the care they need long before comparative information on outcomes is available.
  • Studies should seek to understand how to get people to realize that they (or a family member) have a "special need" without explicitly telling them so. Most consumers believe they are healthier than they actually are, and will not think of themselves as having special needs even if they do.
Tasks 2 and 3. Improving the Supply and Delivery of Information on Quality, and the Supply and Availability of Quality Measures

Critical actions related to this task include the following:

  • Developing a modest set of quality measures, consisting primarily of generic, overarching measures that cut across diseases. These measures must treat people with special needs holistically (i.e., as whole people), rather than compartmentalizing them; providers may be so focused on an individual's special needs that they might miss "routine" health problems, or may fail to deliver needed preventive and primary care. In addition, the language concerning quality needs to change from an emphasis on "fixing" problems to "maximizing the potential" of people with special needs.
  • Developing measures to gauge the quality of home health and long-term care, as no measures (or marketplace) exist today.
  • Building tools (such as surveys available over the Internet) that empower individuals to assess their own care so that they can advocate their own, appropriate care in advance of having comparative data (especially at the provider level, which may be many years away).

Research can assist with these tasks. Specifically, the following issues need to be understood:

  • The impact that giving information on quality to consumers with special health care needs will have on adverse selection.

    Dr. Bethell cautioned against simply assuming that the availability of such information will automatically result in adverse selection for plans that do a good job in serving this population.

  • Appropriate models for risk-adjusted payments, including the impact of such payments on quality.

    Again, it is unwise to simply assume that risk-adjusted payments will improve quality, especially if such payments are made to plans but not passed down to the providers who actually care for consumers with special needs.

  • The impact of telling consumers about actual performance versus relative performance.
Task 4. Identifying the Market Characteristics and Purchasing Strategies That Support Use of Information on Quality

Several actions were identified within this task area, including encouraging consumers to use information on quality to stimulate quality improvement among plans and provider groups (since many consumers have few or no choices and therefore cannot use the information to select plans or providers). Further research on the impact of the consumer choice model in empowering consumers to promote quality improvement is needed.

In addition, the development of structural performance measures was encouraged, such as the participation of consumers with special health care needs in the governance of health plans and provider organizations.

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Segment 4. Consumers with Special Communication Needs

Christine Molnar, M.S., director of the Medicaid Managed Care Education Project for the Community Service Society of New York, authored the commissioned paper on consumers with special communication needs. She served as the moderator of the break-out sessions that focused on implementing the Research and Action Agenda for this segment of consumers.

Brief Overview of the Paper

Ms. Molnar began by noting that a large proportion of the population has special communication needs. Nearly half the population is functionally illiterate, many others have limited language skills because English is not their native language, and still others have vision and hearing problems or face ethnic or cultural barriers that interfere with communication. Because of past experience, these people are often distrustful of the health care system. They often do not have the same degree of choice as mainstream populations, and may feel the system has been unresponsive and inattentive to their needs.

Select for the paper by Ms. Molnar on consumers with special communication needs.

These discrepancies raise an important question related to equity—namely, is there a responsibility to ensure that everyone has the opportunity to benefit from efforts to improve quality? Ms. Molnar believes there is, as she sees health care as a right rather than a privilege. She also noted that improving quality for these consumers fits into the Federal government's national priorities related to reducing racial and ethnic disparities in health care.

Defining Special Communication Needs

People with special communication needs tend to have limited literacy, education, and proficiency in English. They are often racial and ethnic minorities who have come to the United States from another country. Many are low income, with no health coverage or coverage under the Medicaid program.

Why Focus on This Population?

Information on quality can help to remedy racial and ethnic disparities in health care by improving access to care and by rewarding culturally competent providers offering accessible service. In many ways individuals with special communication needs reflect the characteristics of other high-risk populations.

Another reason to focus on this population is to reduce the gap between the care they receive and that which is received by the general public, through strategies such as value-based purchasing and increased accountability among public purchasers, such as Medicaid.

But assisting this culturally and linguistically diverse population is not easy. They face multiple barriers to health services, including a lack of insurance and a scarcity of providers, which results in fewer choices. In short, this population lacks trust in a system that has often been unresponsive to their needs.

Examining the Five Task Areas

Ms. Molnar reviewed each of the five task areas with respect to consumers with special communication needs. Within each area, she summarized where the industry is today and highlighted the key research and action priorities for the future.

Task 1. Encouraging Consumers to Use Information on Quality

At present, the limited data that does exist is not being used, since most Medicaid beneficiaries are assigned to plans while the uninsured have few choices. Many consumers in this segment define quality differently than do other consumers, focusing somewhat more on nonclinical components of care. And many consumers with special communication needs are more concerned about immediate needs such as housing and income than about the quality of health care services.

Priorities for research within this task area include answering the following questions:

  • How do prior experiences in the health care system affect receptivity to quality messages?
  • Are there racial/ethnic differences in patient decisionmaking?
  • Are population-specific communication strategies cost-effective?

Priorities for action include the following:

  • Targeting communication by race and ethnicity.
  • Educating the ethnic media to increase stories and content on health care quality.
  • Building consumers' skills for using data through partnerships with adult learning centers, community colleges, ESL programs, and libraries.

Task 2. Improving the Supply and Delivery of Information on Quality

At present, data on quality are not available at enrollment into Medicaid or the State Children's Health Insurance Programs. When data are available, the presentation can often be intimidating to the consumer; very few intermediaries are available to assist, as schools, social service agencies, and churches generally lack the information and resources necessary to help interpret the data. In addition, language and cultural barriers persist, as information generally is not translated into other languages, while the specific measures often do not reflect cultural concerns.

Priorities for research within this task area include answering the following questions:

  • What is the context? What knowledge base is necessary to support choice? How does prior experience influence content?
  • When are consumers most receptive to information on quality, and from whom? Who are trustworthy intermediaries for each subsegment of this population?
  • What are effective low-literacy formats (e.g., bar charts, stars, narrative/storytelling, pictures, new technologies) for comparative information?
  • Which media are most effective in reaching low-literacy populations that speak limited English?

Needed action steps related to this task area include the following:

  • Incorporating data on quality into eligibility and enrollment activities.

    For example, information can be distributed through recertification notices, enrollment packages, and INS and IRS notices.

  • Building the community's capacity to disseminate, interpret, and use information on quality.

    This task can be accomplished by providing financial, technical, and training assistance; by supporting ombudsman programs; and by identifying trusted spokespeople for this population.

Task 3. Developing Quality Measures That Are Relevant to Consumers

At present, there are no data that measures performance for a specific population of consumers (e.g., a racial or ethnic group, or a group speaking a particular language). There are no standards for measuring culturally competent care or consumer-oriented care systems; consumers have no way of knowing if a particular system even offers needed services such as interpretation, transportation, or other support services, or if they cover and/or provide experimental treatments or clinical trials.

Priorities for research within this task area include answering the following questions:

  • How can we overcome barriers to collecting demographic data?
  • What is the appropriate categorization to reflect disparities in quality? For example, should consumers of Mexican descent be categorized as Hispanic, or should there be a specific category for Mexicans?
  • What are the appropriate measures of cultural competence and access to care?

Priorities for action are listed below:

  • Supporting and evaluating existing efforts at population-specific measurement and reporting.
  • Engaging consumers in defining measures of access and cultural competence.

Task 4. Supporting Use of Information on Quality in the Marketplace

Today, minorities have fewer choices with respect to both providers and plans. Most Medicaid agencies are relatively new to the role of being a purchaser of services from competing plans. And many of the 43 million uninsured Americans receive care from safety net providers operating on an uneven playing field.

A number of research questions must be answered within this task area:

  • What are the consequences of a market approach to quality improvement, including the impact on the safety net, and the ability to drive improvement across-the-board versus in pockets of the system?
  • How can an equity perspective drive quality improvement?
  • How can data on quality be used to improve the accountability of the health care system?
  • How can public health functions, such as surveillance, school-based clinics, and prevention, be reflected in measures of quality?
  • How can choices be increased for Medicaid and uninsured consumers?
  • How can core values of safety net institutions be preserved, including caring for high-risk, high-cost, and uninsured consumers, and acting as community resources?

Priorities for action within this task area include the following:

  • Fostering best practices in infrastructure development and performance measurement by providing financial support, technical support, and training to safety-net and public institutions.
  • Standardizing reporting so that national performance data are available.

The first step in this process involves educating policy makers and opinion leaders on how to use information on quality, and then examining national data to monitor the performance of the health care system in serving racial and ethnic minorities.

Task 5. Evaluating the Results of These Efforts

Important questions related to evaluation are listed below:

  • Are there differences in the demographics of who within this consumer segment uses information on quality?
  • Are there demographic differences in the choices available?
  • How are the data stratified, and are these categories meaningful to the audience?

Panel Comments on the Paper

Three panelists offered their perspective on Ms. Molnar's comments and the commissioned paper.

The Consumer Perspective

Janet Ohene-Frempong, M.P.H., director of the Health Literacy Project for The Health Promotion Council, Inc. in Philadelphia, provided the consumer perspective. In her view, the basic question for people with special communication needs is this: Where can I get the best information for people like me?

The Situation Today

People with special communication needs often feel intimidated to such a degree that they fail to seek out the kinds of information on quality that they need. Illiterate people, for example, fail to look for information because they are often embarrassed when asked to fill out forms they cannot read. People who cannot read are often treated badly and are assumed to be lazy or otherwise deficient. This population also worries about potential repercussions if their communication problems become known; for example, they fear that relationships with doctors may be jeopardized or benefits may be lost. Not surprisingly, they often are discouraged, feeling that nothing will ever change and that the system has no interest in them. In sum, people with special communication needs face tremendous difficulties in navigating the health care system.

Researchers' Role in Improving the Situation

Researchers can play a role in improving communications targeted at this population. For example, researchers surveying these populations can make certain that they explain how the survey results will and will not be used. Additional research can help to understand how to make information on quality more relevant for this population. For example, will response rates be better if we help people respond to surveys? Can surveys be made shorter and more qualitative in nature, and/or be designed to use pictures? Can surveys be organized to reflect the point of view of the target audience rather than relying on an organizational structure that suits the researchers? Traditionally, researchers have been afraid to take these kinds of steps out of concern about the high costs of such changes, the potential to undermine the statistical validity of the data, and a fear of offending more sophisticated respondents.

The Sponsor Perspective

David R. Nerenz, Ph.D., a professor at the Institute for Managed Care at Michigan State University in East Lansing, offered the sponsor perspective. He began by noting that groups with special communication needs include those for whom English is not the primary language, those with different cultural backgrounds and contexts, those with medical problems (such as hearing, vision, or speech disabilities), and those with literacy limitations. Together these groups make up a high proportion of the population.

Dr. Nerenz highlighted a number of problems related to providing information on quality to consumers with special communication needs. First and foremost, because sponsors collecting and evaluating information on quality are responsible for large groups of enrollees, there tend to be limited resources available to focus specifically on the needs of people with communication barriers. Of course, this is not true of all purchasers. For example, Medicaid programs are the sponsors of people with special needs of a variety of kinds, and thus they are likely to be more receptive to data-gathering techniques and dissemination methods that are responsive to the needs of people with communication limitations.

A second problem relates to promoting quality improvement for these populations. Because consumers with special communication needs tend to have higher-than-average risk profiles, health plans do not eagerly compete to enroll them. As a consequence, market forces do not create incentives to improve quality for these consumers.

Finally, while report cards can be useful in measuring quality, they often rely on HEDIS and CAHPS® measures that may not be relevant as gauges of quality for this high-risk population.

The Health Plan/Provider Perspective

Martha Jazo-Bajet, R.N., M.P.H., a preventive services manager with Community Health Group, Chula Vista, California, offered the health plan and provider perspective. As a representative of a health plan that serves primarily Medicaid enrollees, Ms. Jazo-Bajet is acutely aware of the financial difficulties that such plans face when they advertise themselves as being culturally competent health plans. They tend to attract people with costly-to-serve medical problems.

Thus, if a health plan is serious about improving quality for people with special communication needs, commitment must come from the top of the organization, and be reflected in the plan's mission statement.

One of the most important actions a plan can take to ensure quality for this population is to offer providers adequate compensation for serving these individuals; it can be quite expensive for a provider organization to serve multiple groups of consumers with different communication limitations.

Finally, Ms. Jazo-Bajet urged both plans and providers to take a community-based approach by reaching out to existing advocacy groups that can help in devising mechanisms and implementing techniques to reach these special populations more effectively.

Implications for the Research and Action Agenda

Following the panel presentations, presenters and conference attendees focused on identifying and discussing specific strategies, priorities, opportunities, and obstacles related to implementing the Research and Action Agenda for consumers with special communication needs. Ms. Molnar summarized this discussion by reviewing the priorities related to both actions and research questions, and by highlighting the challenges for the future.

Priorities for Action

Related to Task 1 (educating and motivating consumers to use information on quality), the group generally endorsed the concept of a national awareness campaign highlighting the problems with quality. This campaign needs to incorporate the one half of the population without good literacy skills by simplifying the message and by highlighting tangible strategies for addressing the fear and lack of trust felt by those who have largely been left out of the system. To that end, the campaign should form partnerships with ethnic groups and ethnic media (e.g., television, radio, and printed publications). It should also draw in advocacy organizations with strong ties to certain ethnic and racial populations to serve as intermediaries in reaching this population, and to provide guidance and expertise on how quality is defined by this population. These organizations may need training in how to communicate the appropriate message.

Related to Task 2 (improving the supply and availability of information) and Task 4 (identifying market characteristics to support use of information), the group discussion indicated a desire to level the playing field for safety net providers through a significant investment in infrastructure, including management information systems and case-mix adjusted payment systems.

Finally, related to Task 3 (developing consumer-oriented quality measures), the group called for the establishment of minimum standards for measuring performance, including standards for access to care.

Priorities for Research

The group discussion identified the following questions as priorities to be answered by further research:

  • Will the ability to compare data be compromised if the message and use of language is simplified for this population (e.g., by developing a shorter survey instrument)?
  • What categorization scheme(s) will capture meaningful differences in quality across consumer groups?
  • How can health plans and providers capture the data that are needed?
  • What is quality for this population? In particular, what role should process measures play in defining and measuring quality?
Challenges for the Future

Finally, the group discussion highlighted two critical challenges in providing information on quality to individuals with special communication needs:

  • Who will pay for the effort? Pressure needs to be put on various stakeholders to contribute resources.
  • How can the quality agenda improve access to care for the 43 million Americans without insurance?

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General Discussion and Summary from the Four Segments

As a followup to the breakout sessions covering the four consumer segments, the conference included an opportunity for a general question-and-answer session with the four authors.

This discussion highlighted a number of additional questions to be considered:

  • How do researchers take account of a rapidly changing marketplace and consumer base?

    Given rapid changes both inside and outside of the industry (including technological advances and increasingly knowledgeable consumers), a major challenge relates to the appropriate target for information on quality-today's consumer or tomorrow's. For example, many of today's seniors grew up in (and are influenced by) the Great Depression of the 1930s. But in the not-too-distant future most seniors will have grown up after that period of time; these seniors will have different attitudes than their predecessors about health care and quality issues. Similarly, as today's working population retires, seniors will be even more attuned to the idea of using the Internet in everyday life. It will be critical for researchers to stay abreast of these changes using real-time research that captures the dynamics of the marketplace.

  • For which aspects of health care do consumers actually have a choice? Of these, which ones do they want to make a choice about? Are we measuring to assist with selection or to spur quality improvement?

    Most consumers who switch plans have no choice in the matter.

  • Who should be held accountable for what with respect to quality?

    Most consumers still equate quality with the individual physician, as the industry has not done a good job in demonstrating to consumers the role that a medical group or health plan can play in providing quality health care. Americans seem reluctant to accept shared accountability within health care, although they do so in other industries.

  • Do different plan designs have an impact on consumer behavior?

    This issue could become more important as employers move to a defined-contribution approach to financing health care coverage for employees and dependents.

  • What are we trying to accomplish by moving to a defined contribution approach that shifts risk to consumers? What have we learned from using this approach with pensions?

  • Can we afford to wait the 5-10 years it will take to get proper risk-adjustment systems in place to discourage adverse selection? Is it necessary to wait? Once risk-adjustment is in place, will health plans pass on the money to providers?

Summary Themes

Dr. Morrison ended the session by summarizing areas of consensus with respect to needed action steps:

  • There is a need for a national consumer education program on the issue of quality, although it is not clear how that campaign might be funded.
  • Better information technology infrastructure is required, as current systems make it difficult to collect data, especially at the provider level.
  • There is a need for a national tracking system that monitors the quality of the American health care system over time.
  • An investment should be made in studying intermediaries (e.g., friends, family members, physicians), so that we better understand their role and how they can be supported. The type of research associated with a social marketing approach could assist with this effort.
  • Finally, there is a tremendous need for leadership, particularly concerning the issue of whether quality health care is a right or develops naturally in an evolving market. Strong leadership can ensure that a proper dialogue about these two competing views occurs among the relevant stakeholders.

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