As any policy-maker knows, catering to public opinion, ensuring the public interest, and managing costs can seem an impossible task–especially when what the public thinks it wants is at loggerheads with what it needs. But in the case of health care, there may be an opportunity to do all three at once according to a proposal in the September/October Health Affairs.
The proposal argues for cost-effectiveness analysis (CEA) “to set priorities for Medicare coverage of new or costly interventions” through a citizens’ council made up of “a cross-section of users” who can provide leadership with “well-considered social-value judgments.” This citizens’ council model is borrowed from the UK, where a group of 30 men and women advise the National Institute for Health and Clinical Excellence (NICE) on behalf of the public.
The British experience shows that there are likely to be practical complications with implementing a citizens’ council, but it’s still an idea that’s on the right track. We need to turn “cost-effectiveness” from a bad word into a public interest issue in the US.
The authors of the proposal, Dr. Marthe Gold from CUNY, Shoshanna
Sofaer from Baruch College, and Taryn Siegelberg from CUNY, envision
the American citizens council as being an advisor to the Medicare
Evidence Development Coverage Advisory Committee. The council would
advise on the criteria for CEA—in other words, how to decide whether
the effectiveness of a new intervention justifies its cost, and thus
warrants coverage under Medicare. Issues to be deliberated would
include: How should we assess weigh factors such as a patient’s level
of suffering or disadvantage, behavioral choices, and age when making
a decision? How effective must a treatment be to warrant coverage?
Should we give a higher priority to preventions or cures?
These are profoundly difficult questions to answer definitively,
particularly for members of the general public who lack medical
expertise. As the authors note, information is a major concern—the
council needs to know enough to function effectively.
Unfortunately, striking the right balance between information/education
on the one hand and deliberation/ autonomy on the other has proven
difficult. A 2005 study from the Open University showed that the UK
citizens council has “struggled less than successfully with
understanding its role…and understanding the questions set.”
The council, caught between being the voice of the people and needing
to understand complex health care issues, often lacks the right mix of
“knowledge base, role, authority, and the design of the social
situation.” It’s not always clear where the council fits into the
decision-making process, in part because the council is expected to
simultaneously learn about issues and comment on them.
Because of these difficulties, NICE pays “more attention to the process
than the product [i.e. citizens’ advice] and the way in which that
product would be used.” Procedure trumps output. As a result, the
citizens council is sometimes relegated to “abstract core tasks”—such
as issuing general declarations rather than providing substantive
guidance—a pattern that incurred the wrath of patient advocates who
called the council a “toothless tiger.”
Anyone who wants to understand 21st century health care faces a steep
learning curve. Balancing public input with the expertise and nuance
needed to provide meaningful guidance is a tricky business, and the
challenge of doing so should not be underestimated.
Still, the UK citizens council has only been around since 2002, and the
Open University report notes that with every installment of the
council, more and more kinks are worked out. And even if public input
in health priorities represents a challenge, it’s by no means a fool’s
Conventional wisdom assumes—without proof, as Gold et al. note—that
Americans do not want to discuss health care costs because they view
cost-cutting as a synonym for quality-reduction. But the absence of CEA
in the US is due more to a lack of conversation rather than to
Polling data shows that Americans are ready to talk about cost. Indeed,
it’s hard to argue that cost is a non-starter when the public views it
as the nation’s most important health care problem. Back in 1999,
Americans thought AIDS and cancer were bigger concerns, but today it’s
the cost of health care that keeps Americans up at night. The average
American is just as worried about cost as is the policy wonk, making
now the perfect time to institutionalize a role for the public in cost
Requesting public inputs while setting health priorities can begin to
demolish the misconception of “more care is better care” that conflates
cost-effectiveness with stinginess. By opening the insular world of
cost management to public priorities, we defuse the possibility of
Americans viewing CEA as a means to “cheat” them out of care.
Will it be a bumpy ride? Maybe. But if democratizing cost-effectiveness
helps the US move toward smarter, more sustainable health coverage,
then it’s worth the effort.