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6 Public Deliberation Beginning with an overview of public engagement and the venues through which it is sought, the commit - tee highlights the need for the public’s role in making sure that the essential health benefits (EHB) are responsive to user needs and in identifying the core societal values to guide priority setting. The unique features of “public deliberation” and its suitability for decision making around the EHB, per the com - mittee’s Recommendations 1, 3, 4b, and 5, are explored. Examples of the use of a public deliberation process in both the private and the public sectors are presented. A set of guidelines for public delibera - tion is offered that the Secretary could use for informing the Department of Health and Human Services (HHS) about priorities and in directing states for their own application. The purpose of this chapter is to provide the rationale for the committee’s support of the general public having a meaningful role in the design, implementation, evaluation, and updating of the EHB package through two important functions: (1) oversight of the EHB and (2) identification of social values to help guide decisions on what and how coverage is provided within the EHB. Most of the information here relates to this second function. THE PUBLIC VOICE In considering how best to capture the public voice in meaningful ways for the determination of the EHB package, this section explores the potential roles of the public, offers guidance to ensure that public processes are reasonable, and defines the value of public deliberation as a distinct approach that incorporates choices among covered benefits and benefit design in a prioritized fashion. In recent years there has been growing emphasis on patient engagement in health care—helping individual patients become more active in health promotion and self-care, and encouraging a partnership with their physicians and other providers in planning for the services they receive. These efforts are especially important for managing chronic illness and facilitating sound treatment decisions that depend on informed patient preference. Individuals have also been encouraged to become informed consumers when making decisions about their health plans, health care services, and benefit design alternatives. Given the dramatic expansion of health care options, these types of patient or consumer engagement are important and necessary. 103
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104 ESSENTIAL HEALTH BENEFITS The Consumer Adviser Less evident is the role of the public in advising about health care policy decisions that affect society as a whole. As health care has grown in complexity, appointments of patients, consumers, and advocates to boards, committees, task forces, and other advisory bodies are a testament to the recognition that an array of stakeholder perspectives is needed on issues that profoundly affect people’s lives. There are numerous examples in which national and state bodies provide opportunities for consumers to com - ment, respond to, and offer suggestions that may affect health policy. Medicare has a public process for review - ing specific technologies individually. The Medicare Evidence Development and Coverage Advisory Committee (MEDCAC) meets in an open forum approximately four to eight times a year to review submitted evidence, listen to testimony, and deliberate about the quality of the evidence. Of the 94 at-large member positions, selected by the Secretary, 6 are reserved for patient advocates (HHS, 2010), with one participating in every meeting (HHS, 2010). Further opportunities for public input in the service coverage determination process exist, as illustrated in the case of health technology assessment for Medicare decisions as well as in Oregon and Washington State (Table 6-1), and other venues (Menon and Stafinski, 2011). Although opportunities for input are essential, they are not a substitute for formal representation on govern - ing and advisory bodies. The committee believes formal representation will be important for the EHB package if it is to attain and maintain the trust and confidence of those it serves (e.g., on the National Benefits Advisory Council; see Chapter 9). The Citizen Deliberator There is a third role for the public, distinct from the others: helping to reconcile the tension between compre - hensiveness and affordability. Finding the balance between them requires strong political and social will, efforts that can be helped with public deliberation: “the use of critical thinking and reasoned argument as a way for citizens to make decisions on public policy” (McCoy and Scully, 2002, p. 117). Deliberation does not assume consensus, but “it brings into consideration knowledge and judgments coming from various perspectives so that participants develop understandings that are informed by other views” (NRC, 1996, p. 74). A structured interactive process can elucidate the core values by which the public ultimately reaches societal decisions. As long as there are far more ways to spend health care dollars than there are dollars to spend, these core values must play a role in deciding the coverage obligations of insurance and the personal obligations of individual consumers (Fleck, 2009). These two roles—consumer adviser and citizen deliberator—are not intended to replicate, substitute for, or undermine the work of legislative, regulatory, or professional bodies. The complexity of health care and the uncomfortable financial precipice on which it hangs requires a different level of discussion than those that are typically part of policy formation or rule making. A public deliberative process on tradeoffs among benefits and benefit design can help political and health care leaders arrive at better decisions, and going through the process of gathering input can help garner public support, trust, and buy-in (Wynia and Schwab, 2006). Accountability for Reasonableness Using public deliberation as a component of EHB development is wholly consistent with the concept of “accountability for reasonableness” as described in Setting Limits Fairly (Daniels and Sabin, 2008) and the literature on “voice” as described in Exit, Voice and Loyalty (Hirschman, 1970). In a pluralistic society such as the United States, there are often decisions that cannot be answered by science or logic, where different perspec - tives are competing. When deeply held values point to different policy decisions, the way in which these decisions are made becomes an ethical imperative. Daniels and Sabin’s contention is that if the decision process is fair and transparent, the subsequent results are more likely to be ethically justifiable and accepted as legitimate and fair. Although some may be unhappy with the results, they should nonetheless be satisfied that the process for reaching those results was reasonable, participatory, and transparent.
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TABLE 6-1 Summary of Opportunities for Patient or Public Input in Selected Technology Coverage Processes in Different Regions Selection of Review of HTA Results Implementation of Dissemination of Identification of Technologies for and Formulation of Recommendations and Decisions and Technologies Assessment Undertaking of HTAa Recommendations Decisions HTA Findings Adviser and/or Decision Maker Patients Public Patients Public Patients Public Patients Public Patients Public Patients Public National Level USAb Yes No Yes Yes Yes Yes Yes Yes Yes Yes N/A N/A CMS (decisions) Patients and/or Anyone may Anyone may submit Anyone may register Anyone may appeal No information found CMS Medicare carers may refer provide additional information to group to present to the recommendations Evidence technologies for information and/or preparing HTA committee Development and assessment comment on potential Coverage Advisory technology topics Committee identified by CMS staff State Level Oregon, USAc Yes Yes No No Yes Yes Yes Yes No No No No State of Oregon Health Technologies may be N/A Anyone may submit Anyone may register N/A N/A Resources Commission referred by anyone information to group to present to the (recommendations) preparing HTA committee Anyone may provide comments on report and draft recommendations Committee meetings in public Washington, USAd Yes Yes No No Yes Yes Yes Yes No No No No • Washington State Technologies may be N/A Anyone may submit Anyone may provide N/A N/A Healthcare Authority referred by anyone information to group comments on report and (decisions) preparing HTA draft recommendations • Washington State Healthcare Authority Committee meetings Health Technology held in public Clinical Committee a CMS = Centers for Medicare & Medicaid Services; HTA = health technology assessment. b Chalkidou et al., 2009; CMS, 2003, 2006a,b,c; ISPOR, 2011; Washington State Health Care Authority, 2007a. c Oregon Health Resources Commission, 1994, 2006. d Washington State Health Care Authority, 2007a,b,c, 2008. SOURCE: Adapted from Menon and Stafinski (2011) in Expert Review of Pharmacoeconomics & Outcomes Research, February 2011, Vol. 11, No. 1, Pages 75-89 with permission of Expert Reviews Ltd. 105
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106 ESSENTIAL HEALTH BENEFITS Four conditions contribute to being accountable for reasonableness: 1. Publicity: Decisions that establish priorities in allocating resources for health needs and their rationales must be publicly accessible. 2. Relevance: The rationales for priority-setting decisions should aim to provide a reasonable explanation of why the priorities selected were determined to be the best approach. Specifically, a rationale is reasonable if it appeals to evidence, reasons, and principles accepted as relevant by fair-minded people. Closely linked to this condition is the inclusion of a broad range of stakeholder perspectives in decision making. It is crucial that both individual needs and preferences and population needs and preferences should be considered. 3. Revision and appeals: There must be mechanisms for challenge and dispute and, more broadly, opportunities for revision and improvement of policies in light of new evidence or arguments. 4. Regulative: There must be mechanisms to ensure that conditions 1, 2, and 3 are met. The publicity condition exposes the rationales of decision makers. These components are reflected in the recommendations of this committee, which also recognizes that the general public must be part of that “broad range of stakeholders in decision making.” Why Public Deliberation? The usual avenues for citizen input (e.g., petitions, elections, town hall meetings, telephone surveys) capture public opinion. However when issues are complex, are multifaceted, and require tradeoffs among desirable (or undesirable) approaches to a problem, understanding the public’s informed perspectives cannot be achieved simply by gathering public opinion (Abelson, 2010). Not only does the content of the issue require more background information than a survey can provide, but also the deliberative process itself takes the average citizen to a level of judgment that many have not experienced, moving from “What is in the best interest of me and my family?” to “What is in the best interest of all who are sharing in the cost and the use of these services?” There are many reasons for engaging the public on issues such as health care benefits—as a basis for policy development: to educate the public on the challenges of allocating finite resources; to give purchasers information on how their constituents respond to tradeoffs; to study the impact that deliberation has on the public’s views; and to motivate individuals to greater civic participation. It is also a powerful tool for conveying the message, “Your values count.” The elements of health care coverage and decision making are broad and deep. Many components fall under the purview of other players, such as professional associations that set standards for ethical practice; expert panels that develop and recommend clinical guidelines; researchers who study clinical effectiveness; and health plan administrators who determine if a treatment falls within the defined benefits package. The players most central to the use of medical care—physicians and patients—also have specific roles. Physicians diagnose the medical conditions and identify potential treatments for their individual patients. Patients determine which of the recom - mended and available treatments best meet their particular needs. Yet none of these stakeholders has a unique claim on deciding what insurance should pay for. Insurers, leg - islators, and purchasers have typically been the ones to define the boundaries of coverage, yet as the options for coverage expand and available dollars do not, their perspectives cannot be assumed to reflect the views of the public, especially those to whom coverage decisions apply. These circumstances call for a societal perspective of how citizens get the most value for their health care dollar (Fleck, 2009). When coverage is excluded or cost sharing is prohibitive, some will be disadvantaged. People with sufficient discretionary funds still will be able to pay out-of-pocket for uncovered services, while individuals without those resources will not. If the process for determining where the lines for coverage are drawn is reasonable and trans - parent, the results may be unfortunate for some, but they are not unfair.
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107 PUBLIC DELIBERATION COMPONENTS OF PUBLIC DELIBERATION PROCESSES Productive processes for identifying public values as a component of determining the benefit package require attention to four elements: (1) specifying the issues that the public is being asked to address; (2) developing and conducting an effective process; (3) interpreting and using the findings to inform policy decisions; and (4) integrat - ing transparency and accountability. Specifying the Issues for the Public to Address Public deliberation processes can be applied to a wide variety of coverage, policy, and practice issues. For the purpose of the EHB, the committee believes that certain deliberative questions are particularly relevant: • When considering the many types of medical problems that could be covered by health insurance, what makes some a higher priority than others? • How should we determine the limits to when, how, and what medical treatments should be covered? • What is the preferred balance between various cost-controlling measures, such as comprehensiveness of coverage, cost sharing, utilization management, extent of provider network, etc.? • What role should incentives play in encouraging high value care and discouraging low value interventions? • If disadvantaged groups have different needs and priorities than others, what is society’s responsibility to address those needs? • When assessing the benefit of a medical treatment, how should the cost of the treatment be factored into coverage policy? When resources are limited, what is considered a “good value”? • If the costs of life-extending interventions are prohibitive, is it acceptable to insist on lower prices as a condition of coverage inclusion? • If research shows that some physicians or hospitals deliver lower quality care than others, should this be relevant to benefits design? • What should we expect of individuals in terms of their personal health care responsibility? • If some treatments are proven to be ineffective, what impact should this have on coverage policy? Many of the questions refer to priority setting that directly impacts patients or consumers. There are additional ways to tackle cost inflation that do not involve consumer compromises so directly. However, the issues most appro - priate for public deliberation about coverage are those that present tradeoffs affecting consumers directly. In essence, the process is stating that “some choices have to be made about what we are going to pay for using the limited funds in our insurance pool. Because you are part of this pool, we need you to be involved in making these choices.” Although this focus is on consumer tradeoffs, priority setting by the public should not be in lieu of other stakeholders—providers, insurers, pharmaceutical companies, device manufacturers, and others—taking neces - sary actions to reduce their own costs for the sake of a more efficient and responsible system. The concept of shared responsibility must apply throughout the EHB program, and to expect sacrifice solely by the public is both unrealistic and unfair. Developing and Conducting an Effective Deliberative Process There are components of deliberation that distinguish it from focus groups, town hall meetings, and other means of public input. These latter methods elicit public opinion, reflecting general perspectives and level of knowledge at a certain time. However, public opinion does not capture public values—those core beliefs and convictions that surface when people have the time and opportunity to probe their reflexive judgments and weigh difficult options carefully (Abelson et al., 2003). The credibility of a deliberative process relies on careful attention to its design and execution. A commonly used format for deliberative processes is a group session with multiple interactive segments. Participants learn the issue or dilemma, consider alternative approaches, choose options, voice perspectives, hear the views of others,
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108 ESSENTIAL HEALTH BENEFITS debate choices, and identify common ground (Abelson, 2010). Because the alternative approaches all have advan - tages and disadvantages, deliberation means taking the time to weigh and discuss each, uncovering personal and societal convictions about what can and cannot be compromised. When conducted by skilled, impartial facilitators, deliberation is always interactive, where demographically represented members have a chance to give their own perspectives and hear the views of others. Most important, deliberation deals with explicit tradeoffs, where decisions to accept one course of action invariably mean giving up a different one. Thus, a deliberative process for the EHB must be structured around a finite budget or specific ranking where participants’ decisions explicitly reveal a hierarchy of evaluation. It is this hierarchy requirement that encourages participants to consider carefully what has the most value and why. The discussion process incorporates common vernacular and experiences of the lay public. Seeing how these options apply in real-life situations allows people to grasp their relevance and assess the impact on themselves and on others. Developing the discussion protocol—how participants are introduced to the dilemmas, the examples of situations that illustrate the “conflict,” the process of individual and group decisions—is generally done by experts skilled in deliberative methods. The legitimacy of the process hinges on the extent to which these sessions are (and are perceived to be) factually accurate, balanced, unbiased, representative, and designed commensurate with the knowledge and abilities of the lay public (Fleck, 2009). Other parameters that also speak to the credibility of the process include the following: • Number of sessions. These sessions are far more labor-intensive than phone surveys, so the number of participants will likely be smaller. Although 10 small group sessions (totaling about 120 people) can provide the full range of views, some stakeholders may feel that more sessions are needed for the process and results to be credible to the wider public. Available time and funding often dictate the number of groups that can be conducted. • Location of sessions. Geographic diversity is especially important given the variety of populations that reside within states and the nation as a whole. • Length of sessions. Two- to three-hour discussions are common; more extensive meetings (half-day to multi-day) yield more and richer results but are not always practical. • Participant sample. The target population needs to be defined, whether it is those who are expected to use insurance defined by the EHB, the general public, or particular subsets of the population. Diversity of other demographic features (age, gender, insurance status, ethnicity, education, household income, etc.) is also important. Although most groups are heterogeneous, at times homogeneous group discussions (such as all Spanish-language or adult disabled groups) are needed to truly capture some unique perspectives. With fewer participants than in a phone survey, attention to representative sampling will help instill confidence in the integrity of the effort. • Recruitment strategies. These vary from asking the help of local organizations to posting notices, using professional recruitment firms, and other methods. The more professional the recruitment process, the more likely is demographic representation to be achieved. • Facilitation. Sessions should be facilitated by experienced, neutral professionals who have no vested interest in the outcome or ties to stakeholder groups. Although the discussion protocol is the building block for a credible process, it is the facilitation that determines how participants engage and the impartiality with which the sessions are conducted. • Respecting privacy of participants. For participants to feel that they can speak freely and openly, they must know that their words will not be publicly attributed to them. Although the names of all participants and the transcripts should be publicly available, individual comments should not be identified by name or demographic characteristics. • Participant feedback. There are a variety of ways to assess the success of deliberative sessions, including the reactions of the participants themselves. Post-discussion surveys can determine how participants responded to the process and their assessment of whether it met the goals of being inclusive and balanced. Although the target groups for deliberative participation are typically those most likely to be subject to the coverage limits, other stakeholders can benefit by observing the deliberative sessions or being participants in
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109 PUBLIC DELIBERATION separate sessions.1 Policy and health care leaders usually have no more experience in prioritizing health care benefits than does the general public. Experiencing the challenges—and noting where these elites do and do not make decisions differently from others—can be an eye-opener for policy experts. Interpreting and Using the Findings to Inform Policy Decisions When deliberative sessions involve larger numbers of participants, quantitative data can be collected and ana - lyzed, but the most meaningful findings from sessions of any size are qualitative: the reasoning and rationale for participants’ choices. These qualitative data are derived from transcripts (audio and/or video) of session recordings. Just as the development of the discussion protocol and the facilitation of the sessions should be objective and nonpartisan, so should the interpretation of the findings and the development of conclusions or recommendations. The group given this task could include different players, those intimately involved with the deliberations, and those who might bring “fresh eyes” to reviewing the transcripts and conclusions. Most importantly, these findings should be used to inform policy decisions and public education (Sabik and Lie, 2008). This does not mean that everything the public values takes precedence over all other considerations, but the results should not be ignored or given only token attention. The success of the EHB structure will depend to a large extent on trust by the public—as those whose insurance is defined by the EHB, as taxpayers, and as interested and concerned citizens—and this trust will be damaged if deliberation is viewed as window-dressing. Building public deliberation into the EHB process can also contribute to public understanding of the need to make tough choices about the allocation of health care resources. An effective process will have a public communication plan for both the process and its findings, with targeted audiences including the decision makers, the participants, the general public, and the entities to which the decision makers are accountable. Inattentiveness to the communication plan can jeopardize the acceptance of the findings, but an effective communication plan can help to build consensus. Integrating Transparency and Accountability The need for transparency extends beyond a communication plan. Indeed it should be embedded in the delib - erative process as a “way of doing work.” The three components of public deliberation—specifying the issue, developing and conducting the process, and interpreting and using the findings—each must be fully transparent to those participating and those on the periphery. Transparency and accountability are the responsibility of the authority ultimately charged with making the EHB determination—the Secretary or the designated state unit. Specifically, these may be manifested in actions such as the following: • Forming an advisory committee—with representatives of various stakeholders, including consumers and consumer advocates—to provide oversight to the public deliberation process; • Publicizing information on why public deliberation processes are being conducted; • Providing opportunities for others to offer suggestions for deliberative topics; • Making available transcripts and qualitative data (redacted to maintain confidentiality of participants’ individual comments) to the public on request; • Making available a draft version of the analysis for review and comment prior to the final version; and • Conducting a public session to present the results of the analysis and to get feedback from policy leaders. 1 For example, a deliberative prioritization process (CHAT) was conducted as a 2-hour educational program with 18 business and health care groups in 2009-2010 totaling 250 people. In response to this post-discussion question, Which statement most closely represents your view about participating in this CHAT session, 32 percent responded, This will affect how I consider coverage policy in the future; 63 percent responded, This has given me something to think about; 5 percent responded, No new information but it was enjoyable; none responded, This was not a good use of my time (Center for Healthcare Decisions, unpublished data).
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110 ESSENTIAL HEALTH BENEFITS EXAMPLES OF PUBLIC PARTICIPATION AND DELIBERATIVE PROCESSES For many years, a number of organizations in this country have developed and/or conducted civic delibera - tion on a wide variety of public policy issues. The academic community also studies civic deliberation—learning how the public reaches informed decisions, the strength of those decisions, and the impact this has on individuals’ sense of civic duty. However the most noteworthy use of public deliberation to help inform new health care policy was in Oregon in 1989. Oregon Health Plan As part of the Oregon Health Plan to expand Medicaid to more Oregon residents, Oregon’s Senate Bill 27 of 1989 required the Health Services Commission to “actively solicit public involvement by a community meeting process.”2 The architects of the plan recognized that defining a “basic” level of care “must be based on criteria that are publicly debated, reflect a consensus of social values, and consider the good of society as a whole” (DHS, 2006, p. 2). Although a variety of tools were used to gain public input, the initial citizen discussion groups pro - vided the commission with a set of core values to help guide the prioritization process. These discussion groups used a vignette approach, illustrating a range of health care situations and the impact they had on individuals. In 47 small group discussions around the state, skilled facilitators asked participants to rank order the vignettes by their importance for health care coverage and then to discuss their rationale for the rankings. The purpose was not to ascertain a numerical score but to identify the reasoning people used in considering their prioritizations. Understanding the relative importance of various states of health and the significance of different medical problems for individuals and for society helped the Health Services Commission craft its initial set of coverage categories. These community discussions, while thoughtfully and professionally constructed and analyzed, were subject to much criticism because they did not include the necessary demographic diversity. This failure to meet the criterion of an appropriate participant sample was the consequence of insufficient funding to support the effort needed to find, recruit, and provide stipends to those on Medicaid or those who would qualify under the new state health plan. Thus, these meetings were overrepresented by well-educated, higher-income individuals, many of whom were health care professionals. Nevertheless, Oregon’s long-standing commitment to public participation at all stages and organizational levels is well demonstrated. There is consumer representation on the commission, and meetings are held pub - licly usually every 1 to 2 months, with the opportunity for both public testimony and review of draft reports and recommendations. One of the most unique aspects of the Oregon Health Plan, however, was not public engagement per se. It was that the Oregon legislation required that a process to identify public values be a component and that the results were incorporated into the structure of the plan. Other known instances where public deliberation was instrumental in effecting coverage expansion plans were in the communities of Muskegon, Michigan (Fronstin and Lee, 2005), 3 and Galveston, Texas (Danis et al., 2010). They both used public prioritization processes in establishing plans for low-income employees of small businesses. Both of these communities had separate funding to help underwrite the costs of the deliberative processes. To avoid situations like Oregon’s where the meetings were conducted on a shoestring budget, national and state leaders may have to ask the philanthropy community to help fund these efforts. In most cases, deliberative sessions are held episodically, so the funding needed is usually short term. Public Sector Interest In the past 5 years, prior to the passage of the ACA, several states have sponsored, organized, and conducted public deliberation sessions to help inform coverage expansion plans in their states. 2 State of Oregon S.B. 27 (1989). 3 Personal communication with Vondie Woodbury, Muskegon County Health Project, February 2007.
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111 PUBLIC DELIBERATION The state departments of insurance of Ohio, Oklahoma, Montana, and North Dakota, under the direction of their state commissioners, all sponsored statewide discussion groups to identify core values and priorities for coverage for the uninsured. Although implementation of these health care expansion programs was stalled because of the economic downturn, the results of the deliberative sessions were useful in providing direction for policy leaders (Danis et al., 2010; North Dakota Insurance Department, 2011; Ohio Department of Insurance, 2009; State of Oklahoma, 2009). In California in 2004, a public deliberation project was conducted with adult disabled Medicaid beneficiaries (Danis et al., 2006; Ginsburg and Glasmire, 2004). This was designed to see how recipients themselves would construct a benefits package that had to incorporate a 15 percent cut in the cost of coverage, the projected size of the proposed Medi-Cal budget reduction that year. State officials watched this project with interest, which provided them with important information and insights regarding recipients’ views and priorities. 4 Private Sector Interest A deliberative tool called CHAT (see details below) opened up opportunities for employers to engage their employees in priority setting for health plan benefits. The early 2000s brought rapidly rising premiums, and anx - ious employers were seeking ways both to educate their employees about the challenges of maintaining affordable health coverage and to gain input on the coverage issues that were especially critical to them. Allina Foundation in Minnesota sponsored a statewide project with the Minnesota Chamber of Commerce in 2001 to gain employee input on how to best structure employer-sponsored health benefits (Minnesota Chamber of Commerce and The Allina Foundation, 2001). The Center for Healthcare Decisions conducted two projects in the greater Sacramento region in 2002 (Danis et al., 2007) and 2006 (Ginsburg et al., 2006), engaging diverse groups of employees in decisions on, respectively, what aspects of coverage were most important for their company’s health insurance and what constitutes the elements of a basic health plan for the uninsured. Although the primary intent of the first project was to help employees gain knowledge and insights about health plan coverage limits, at least two employers used the results to help inform their own health plan changes (Danis et al., 2010). CHAT (Choosing Healthplans All Together) One particular tool for decision making has received considerable attention in the past 10 years. Developed in 1998 by two bioethicists—Drs. Susan Dorr Goold at the University of Michigan and Marion Danis at the National Institutes of Health—CHAT is a simulation exercise for designing a benefits package when there are more options than there are available funds (Goold et al., 2005). This small group process requires participants (as individu - als and as a group) to make choices among competing health care priorities. It is typically conducted with each participant using an individual laptop before coverage decisions must be made as a group. The flexibility of the CHAT software allows the options to be modified as needed to expose participants to the specific choices and tradeoffs that are relevant to the policy issues being explored. An actuarial analysis is incorporated into the CHAT model to ensure that choices are a realistic representation of actual costs. Among the tradeoffs that can be represented are such competing priorities as ranges of provider choice, degrees of cost sharing, types of cost sharing, extent of coverage categories, types of treatment available, utiliza - tion oversight, and standards of treatment effectiveness, among others. The descriptions use terms and concepts that are understood by the average consumer. Quantitative data are easy to capture, but the dominant feature of the process is the interactive dialogue, debate, and negotiation that takes place when a group of 12-15 participants seeks agreement on what aspects of coverage are most important and why. In the United States, CHAT has been used in at least 10 states to help inform state and community leaders about covered benefits and benefit design, including those mentioned previously under the section Public Sector Interest (Danis et al., 2010). In California, CHAT has been used with insured employees, Medicaid beneficiaries, the uninsured, health care professionals, 4 Personal communication with Kim Belshe, former Secretary, California Department of Health and Human Services, July 5, 2011.
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112 ESSENTIAL HEALTH BENEFITS and policy leaders and as an educational program for health care and business leadership development (CHCD, 2011; Ginsburg and Glasmire, 2007; NIH, 2011). CHAT is not the only way to conduct public deliberation about benefits. Less time-intensive and technology- dependent formats can be developed, and other processes have been used for topics related to resource allocation decisions (CHCD, 2009; CHCD and Sacramento HealthCare Decisions, 2001, 2006; Gold et al., 2007). Deliberative processes on other aspects of health care (and other public policy issues) are conducted in communities across the country by Public Agenda, National Issues Forum, AmericaSpeaks, Viewpoint Learning, and other organizations. Participants’ Reaction Policy leaders may wonder if the public might regard its participation in coverage decisions with suspicion or resentment. This was a particular concern when the Center for Healthcare Decisions (CHCD) conducted delibera - tive sessions with adult disabled Medi-Cal beneficiaries, as referenced earlier in this chapter. CHCD thought that participants would be outraged at the idea of being asked to make decisions that would reduce their own benefits (which, in fact, was their assignment using the CHAT process). Surprisingly, the general response was, We know the state is talking about cutting Medi-Cal; we’d rather have a say in this than be ignored . A post-CHAT survey question reflected this sentiment (Table 6-2). SUMMARY OF GUIDELINES FOR PUBLIC PARTICIPATION At every step of their work, national and state entities responsible for defining and refining the EHB should ensure meaningful and visible public participation. There are two broad areas in which guidelines regarding public participation are relevant: (1) in the oversight of the EHB program and (2) in the identification of social values to help guide decisions on what and how coverage is provided within the EHB. These guidelines are consistent with the criteria outlined in Figure S-2 in the Summary and include the following: • The National Benefits Advisory Council (see Recommendation 5 in Chapter 9) and governance of the state health insurance exchanges need to ensure that the consumer or citizen voice is an active one in the development, operations, and evaluation of the EHB. This may be best achieved through public deliberation, advisory committees, and/or other means of public input and participation. • A credible process for establishing the EHB includes a public deliberation component. These structured, interactive group sessions identify the values and priorities of key constituents (such as people whose insurance is defined by the EHB) and are germane to establishing the EHB. • A public deliberation process is also encouraged when seeking approval of state variants in an EHB package or waivers (Recommendation 3 in Chapter 8), and at other times when meaningful changes in benefits structure are being considered. When these are conducted at the state level, these processes are under the direction of the governor or his/her designate (e.g., the exchange governing body). TABLE 6-2 CHAT Results from Medi-Cal Survey of Users’ Views (Adults with Disabilities) on Public Input in Areas of Budget Cut Agree or Disagree: If the Medi-Cal budget is cut, I think it is important for Medi-Cal users to have a role in deciding how the cuts are made (N = 131) Agree strongly 89% Agree somewhat 5% Disagree somewhat 2% Disagree strongly 2% Not sure 1% SOURCE: Ginsburg and Glasmire, 2004.
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113 PUBLIC DELIBERATION • Public deliberation processes follow protocols that ensure they will be nonpartisan, reasonably representative and inclusive, and professionally designed, executed, and analyzed. The deliberative sessions are of sufficient number so as to produce meaningful and trustworthy findings. • The findings and recommendations of deliberative sessions are made public (and open to public comment) prior to final reporting. • Development of or changes in the EHB are accompanied by an explanation of how they relate to the findings of the relevant deliberative processes. The values of an informed public are not always determinative. The concerns of public health and legislative leaders and issues of social justice (particularly relating to vulnerable populations) may take precedence over some of the priorities identified by the general public. Ultimately, policy leaders are responsible for balancing the needs and interests of multiple stakeholders with diverse concerns. 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