Editor’s Note: This is part two of a two-part blog by several of the 2006-2007 Commonwealth Fund Harkness Fellows. Part one, which ran yesterday, describes the extent to which these international scholars felt able to make meaningful choices in their interactions with the American health care system. In part two below, the authors propose changes to strengthen the ability of consumers in the United States to make health care choices.

Vidhya Alakeson (United Kingdom) is the lead author. Other authors include Mark Booth (New Zealand); Robbie Foy (United Kingdom); Bruce Guthrie (United Kingdom); Richard Hamblin (United Kingdom); and Ruth Lopert (Australia).

As new users of the U.S. health care system, were we just unable to make it work for us, or did others have similar problems turning choice into a feeling of control? We were keen to find out whether our experiences of choice were typical. In pursuing this question, we were fortunate that our arrival in the country coincided with a major experiment in choice: the introduction of the Medicare Part D outpatient prescription drug benefit for Americans over sixty-five and younger disabled people. 

One of the key objectives in the design of Medicare Part D was to ensure choice, and, in some respects, the program has arguably been unexpectedly successful. There are currently far more stand-alone participating prescription drug plans (PDPs) and Medicare Advantage prescription drug (MA-PD) plans in the market than predicted: In 2007 there are 1,875 PDPs, 3,971 MA-PD plans, and 471 Special Needs Plans. Plans also differ in their premiums, covered drugs, number of tiers, cost-sharing arrangements, utilization management tools, and the extent to which reimbursement is offered in the infamous doughnut hole, or coverage gap. 

The complexities we faced in negotiating access to care seemed to pale when compared to the task facing the average Part D enrollee. A beneficiary may choose whether or not he wishes to have coverage, but if he chooses not to enroll and then changes his mind at a later date, he will be penalized by the addition of 1 percent to the cost of his premiums for each month’s delay. He may choose among a wide variety of plans but, for the most part, may only exercise that choice during the six-week enrollment window between mid-November and the end of December each year. If an enrollee chooses not to choose, or makes a choice that he later decides he doesn’t like, the enrollee — with the exception of certain low-income enrollees — is stuck with it until the enrollment window reopens.

Far from control, the nature of the choices offered under Medicare Part D has created a sense of bewilderment for many elderly and disabled Americans. Trying to make meaningful comparisons between plans requires time and patience, and a degree of technological sophistication that many beneficiaries lack. More importantly, beneficiaries cannot choose something that many of us would value highly: a stable benefit with constant coverage throughout the year. Plans can choose to vary benefits or the formulary at any time, but enrollees cannot take their business elsewhere until the next enrollment period. Finally, irrespective of how carefully an enrollee selects a plan based on current needs, he cannot predict future needs. As a result, even a carefully considered choice may lead to both uncertainty and unpredictable out-of-pocket costs. 

Medicare Part D is an extreme example of a phenomenon that we found to be common in U.S. health care: The design of the policy prioritizes the act of choosing rather than the outcome of the choice. Not enough consideration is given to whether the time and effort required to make a choice are justified by the value created by the choice itself, or whether it is possible to make an informed decision. In our experience, this was the difference between choice for choice’s sake and choice that led to a greater sense of control. 

By contrast, “self-directed care” seemed to us a far more promising approach to choice in health care. In self-directed care, individuals are allocated a budget based on their assessed need for services. Instead of receiving services organized by the state or a Medicaid managed care plan, they use their budget to organize their own care and can choose to purchase goods and services that are not available through the traditional system. 

By “self-directed care,” we do not mean what Americans refer to as “consumer-directed” care. Crucially, participants in self-directed care generally have a counselor whose expertise can guide them through the system and help them make informed decisions that increase control. They also have a financial manager to oversee the related transactions. This type of support is not cheap, but it can be funded in part by redirecting resources from traditional case management and also by the savings generated through greater use of early intervention rather than acute care. 

Self-directed care has been shown to dramatically increase satisfaction with services, in large part because it gives people a greater sense of control over their care. This is despite the fact that self-directed care serves particularly vulnerable populations that many would consider poorly equipped to make choices

Self-directed care primarily exists now in long-term care for the elderly and disabled. Many of the choices that people make in these programs relate to nonclinical services such as personal care, where individual preferences weigh heavily and professional expertise is less important (although some states have been extending the self-directed model to clinical and therapeutic services). It is potentially less intimidating for people to have to make choices in the nonclinical context and easier to motivate them to do so. But this is not to underestimate the importance of the design of self-directed care. It stands out from other types of choice in the U.S. health care system for two reasons. 

First, as we discovered, in the rest of the health care system, individuals have to seek out their own sources of information and advice, whether that is their primary care practitioner, friends, family, or, more worryingly, the media. Our experiences suggest that the current enthusiasm for the public reporting of health care information as a way to help consumers shop for value is premature. Much of the information that is available is often irrelevant to the choice in question or overwhelming for lay users in its scale and complexity. Despite significant progress in recent years, many issues around data quality, measurement, standardization, and presentation must still be tackled before information asymmetries in health care can be seriously redressed. 

Second, self-directed care also gives individuals choice over the type of services they receive, not only over who provides those services. Choice of providers is the focus of rhetoric and policy in the U.S. and internationally. But in many circumstances, meaningful choice in health care does not equate to choosing between different providers. This is particularly so for the rapidly growing population with chronic conditions who are attempting to negotiate a pathway of disease management rather than seeking a discrete episode of elective care. If the plan or provider choice on offer does not allow patients to choose the kind of care that is most meaningful to them, it is unlikely to increase an individual’s sense of control over their health care. 

As our year in the U.S. draws to a close, it is time to reflect on our firsthand experience of choice in the U.S.. From our perspective as non-Americans, it is striking just how important choice is to the American people. To many it is the embodiment of the founding fathers’ belief in individual freedom and stands in direct contrast to government action. Any future health care policy must, at a minimum, pay lip service to choice to win public support and avoid being perceived as a “big government” solution. In this way, choice has become a proxy for control over health care, rather than a tool for achieving it. 

These rhetorical considerations are less significant in our home countries, where the public places greater emphasis on access than on choice. For example, in a recent survey in the U.K., patients put choice of hospitals for inpatient care close to the bottom of a list of eighty-two health care priorities. This may give policymakers in our home countries an advantage and help them avoid some of the pitfalls we described in this essay. 

Our experience in the U.S. challenges the rhetoric that choice gives patients a greater sense of control over their care. In fact, choice can come at a high price: complexity, greater uncertainty, or wasted time and effort. Choice is valuable where people’s personal experiences and preferences count and where their choices can make a meaningful difference to their experience of care. To support meaningful choice, we need to invest not only in the development of reliable sources of information but also in face-to-face advice and counseling services. Implemented in this way, choice can empower patients and improve the quality of health care.