Setting Boundaries: Public Views on Limiting Patient and Physician Autonomy in Health Care Decisions.

We obtained and qualitatively analyzed input from more than nine hundred citizens during seventy-six public deliberation sessions about patient and physician autonomy in decision making, setting health care boundaries, and the tensions among competing social values. Generally, participants resisted interference with the patient-physician relationship and believed strongly in the freedom of patient and physician to control individual medical decisions. However, during deliberation participants identified two situations where boundaries and regulations in health care were more acceptable: protecting people from harm and allocating limited resources. The core value of individual freedom was tempered in varying degrees by the values of concern for the greater good and fairness in allocating resources. Where tensions between values emerged, participants used different concepts-including accountability, transparency, trust, personal responsibility, and moral obligation-to navigate trade-offs. Fairly balancing the public's desire to protect individual freedom with their sense of responsibility for protecting the common good may be the key to developing acceptable, workable policies that promote evidence-based medical practice.

The coverage priorities of disabled adult Medi-Cal beneficiaries.

Medi-Cal, like other Medicaid programs around the U.S., has been pressed to cut its budget. We report the results of a project using the CHAT (Choosing Healthplans All Together) exercise, designed to ascertain the priorities of disabled adult Medi-Cal beneficiaries to inform any decisions regarding Medi-Cal benefits. Participants voiced greatest interest in maintaining a wide spectrum of benefits and access to a large pool of providers and were most willing to restrict pharmacy benefits. The resulting findings may be of value to legislators drafting Medicaid proposals that revise benefits for this vulnerable population.

Understanding An Informed Public's Views On The Role Of Evidence In Making Health Care Decisions.

Policy makers and practitioners increasingly believe that medical evidence plays a critical role in improving care and health outcomes and lowering costs. However, public understanding of the role of evidence-based care may be different. Public deliberation is a process that convenes diverse citizens and has them learn about and consider ethical or values-based dilemmas and weigh alternative views. The Community Forum Deliberative Methods Demonstration project, sponsored by the Agency for Healthcare Research and Quality, obtained informed public views on the role of evidence in health care decisions through seventy-six deliberative groups involving 907 people overall, in the period August-November 2012. Although participants perceived evidence as being essential to high-quality care, they also believed that personal choice or clinical judgment could trump evidence. They viewed doctors as central figures in discussing evidence with patients and key arbiters of whether to follow evidence in individual cases. They found evidence of harm to individuals or the community to be more compelling than evidence of effectiveness. These findings indicate that increased public understanding of evidence can play an important role in advancing evidence-based care by helping create policies that better reflect the needs and values of the public.

Improving end-of-life care in nursing facilities: the Community State Partnership To Improve End-of-Life Care--California.

BACKGROUND: The California Coalition for Compassionate Care formed in 1998 when activists and organizational leaders in several arenas sought to link their efforts for synergistic impact on end-of-life care and to obtain funding to sustain their forward momentum and collaboration. The Coalition focused on public engagement, professional education, and reforms in skilled nursing facilities. With skilled nursing facilities, the Coalition's work built on the efforts of the ECHO (Extreme Care, Human Options) Long Term Care Task Force, which served as a precursor to the Coalition. OBJECTIVE: The Coalition's objective was to assist committed facilities in devising processes of care that would operationalize basic end-of-life care principles in a manner specific to their particular facility. DESIGN: The Coalition recruited three-member leadership teams from nursing facilities throughout California to attend a 2-day training program, write an action plan, and receive 6 months of modest follow-up support. To assess its success, the group used posttraining evaluations, a follow-up evaluation, a focus group, and informal feedback over several years to assess the dynamics, achievements, and challenges of their efforts. RESULTS: In 2000-2002 the training reached 298 people representing 109 nursing facilities and each district office of the nursing facility surveyors. Response to the training was enthusiastic. Self-reported improvements in 27 care practices were best in the areas of pain assessment and management. Completion of nursing facilities' self-identified action plans varied widely. Participants generally perceived the commitment to improving end-of-life care as a vehicle for improving the overall care and quality management in nursing facilities. CONCLUSIONS: The specific challenges of organizational change in nursing facilities require sustained, focused leadership and hands-on guidance to overcome the inevitable barriers and setbacks. The Coalition's experience confirms that coalitions depend upon personal commitments and relationships, a focus on practical products, and a consistent infrastructure.

Effectiveness of public deliberation methods for gathering input on issues in healthcare: Results from a randomized trial.

UNLABELLED: Public deliberation elicits informed perspectives on complex issues that are values-laden and lack technical solutions. This Deliberative Methods Demonstration examined the effectiveness of public deliberation for obtaining informed public input regarding the role of medical evidence in U.S. healthcare. We conducted a 5-arm randomized controlled trial, assigning participants to one of four deliberative methods or to a reading materials only (RMO) control group. The four deliberative methods reflected important differences in implementation, including length of the deliberative process and mode of interaction. The project convened 76 groups between August and November 2012 in four U.S. LOCATIONS: Chicago, IL; Sacramento, CA; Silver Spring, MD; and Durham, NC, capturing a sociodemographically diverse sample with specific attention to ensuring inclusion of Hispanic, African-American, and elderly participants. Of 1774 people recruited, 75% participated: 961 took part in a deliberative method and 377 participants comprised the RMO control group. To assess effectiveness of the deliberative methods overall and of individual methods, we evaluated whether mean pre-post changes on a knowledge and attitude survey were statistically different from the RMO control using ANCOVA. In addition, we calculated mean scores capturing participant views of the impact and value of deliberation. Participating in deliberation increased participants' knowledge of evidence and comparative effectiveness research and shifted participants' attitudes regarding the role of evidence in decision-making. When comparing each deliberative method to the RMO control group, all four deliberative methods resulted in statistically significant change on at least one knowledge or attitude measure. These findings were underscored by self-reports that the experience affected participants' opinions. Public deliberation offers unique potential for those seeking informed input on complex, values-laden topics affecting broad public constituencies.

Cost-effectiveness: will the public buy it or balk?

The prospect of cost-effectiveness as a criterion for treatment or coverage decisions may be met with stiff resistance from the public. A characteristically American reverence for new technology and abhorrence at putting a price on life conflict with the premise of value-based decisions. Nevertheless, if particular checks and balances are incorporated, consumer acceptance is possible. Since health care leaders deny that cost plays a role in coverage decisions, it may be time for a more realistic and open public debate on how to incorporate cost to achieve an optimal allocation of resources.

Hospital tiering: how will it play in Peoria?

Cost-sharing strategies such as hospital tiering will require consumers to make cost-benefit decisions where they have little experience. This responsibility may be further challenged by prevailing consumer perspectives: that health insurance is an open-ended service benefit; that medical treatment decisions should not be influenced by costs; and that consumers are not responsible for the current cost crisis. Although there are steps providers can take to prepare consumers for their new role in cost sharing, health care leaders need to begin moving from a consumer-driven to a citizen-driven approach.

Value-based insurance design: consumers' views on paying more for high-cost, low-value care.

Value-based insurance designs frequently lower consumers' cost sharing to motivate healthy behavior, such as adhering to medication regimens. Few health care purchasers have followed the more controversial approach of using increased cost sharing to temper demand for high-cost, low-value medical care. Yet there is evidence that when health care's affordability is at stake, the public may be willing to compromise on coverage of certain medical problems and less effective treatments. Businesses should engage employees in discussions about if and how this type of value-based insurance design should apply to their own insurance coverage. A similar process could also be used for Medicare and other public-sector programs.

Experience in the United States with public deliberation about health insurance benefits using the small group decision exercise, CHAT.

"Choosing Healthplans All Together" (CHAT) is a small group decision exercise designed to give the public a voice in priority setting in the face of unsustainable health care costs. It has been used for research, policy, and teaching purposes. Departments of insurance in various states in the United States have used CHAT to determine public opinion about what should be included in basic health insurance packages for the uninsured. Some municipalities have used it to assess public priorities for direct service delivery to the uninsured. Setting up the exercise requires substantial preparation, but the public finds it simple to use and understand.

Enhancing employee capacity to prioritize health insurance benefits.

OBJECTIVE: To demonstrate that employees can gain understanding of the financial constraints involved in designing health insurance benefits. BACKGROUND: While employees who receive their health insurance through the workplace have much at stake as the cost of health insurance rises, they are not necessarily prepared to constructively participate in prioritizing their health insurance benefits in order to limit cost. DESIGN: Structured group exercises. SETTING AND PARTICIPANTS: Employees of 41 public and private organizations in Northern California. INTERVENTION: Administration of the CHAT (Choosing Healthplans All Together) exercise in which participants engage in deliberation to design health insurance benefits under financial constraints. MAIN OUTCOME MEASURES: Change in priorities and attitudes about the need to exercise insurance cost constraints. RESULTS: Participants (N = 744) became significantly more cognizant of the need to limit insurance benefits for the sake of affordability and capable of prioritizing benefit options. Those agreeing that it is reasonable to limit health insurance coverage given the cost increased from 47% to 72%. CONCLUSION: It is both possible and valuable to involve employees in priority setting regarding health insurance benefits through the use of structured decision tools.

Rearranging the deck chairs.

In their efforts to make insurance premiums more affordable, employers and health plans are promoting consumer-directed health care as a consumer-friendly alternative that will cut costs and improve quality. In my view, consumer-directed care reflects health care providers' failure to deliver value and unrealistically assumes that consumers can make sound, cost-effective medical decisions. It also evades the fundamental question of how society defines the limits and obligations of health insurance, and it could stall meaningful action to hold all stakeholders accountable for an equitable, high-quality, and affordable system.

(De)constructing 'basic' benefits: citizens define the limits of coverage.

Many initiatives for covering the uninsured call for "basic" health care coverage, yet few define that term. The Just Coverage project used a computer-based simulation exercise to learn how nearly 800 community members in northern California identified the inclusions and exclusions that would constitute basic coverage. Working with a limited budget, participants distinguished essential from nonessential health care needs, resisted high patient cost sharing, and tolerated tight restrictions on provider choice. They also supported practice guidelines and standards of effectiveness, and they excluded high-cost, low-value interventions. These results reinforce the importance of community input to policymakers.