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 comment, respond to, and offer suggestions that may affect health policy. Medicare has a public process for reviewing 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 governing 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 comprehensiveness 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 perspectives 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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