Editor’s note: For more on the attitudes of Americans toward medical care and empowering patients to be active participants in their own care, see the February issue of Health Affairs, “New Era Of Patient Engagement.”

The attention now devoted to defining the proper role of patients and consumers in clinical decision-making is unusual, both in terms of who is addressing the issue and the intensity of the concern.  Once, it was physicians and bioethicists who took the lead; now it is health policy analysts and health care administrators.  Their aims go well beyond improving doctor-patient communication or promoting patient autonomy. The primary goal is to enlist patients in the effort to bring fundamental change to health care delivery.

The obligations conferred upon or assumed by patients have changed dramatically over the past half-century. Well into the 1950s, prevailing norms reflected Talcott Parsons’ formulation of the sick role. Patients were duty-bound to seek medical care when ill and follow physicians’ orders.  In the 1970s and ‘80s, the new field of bioethics successfully challenged this paradigm, demanding that physicians obtain patients’ informed consent for all interventions, particularly in end-of-life decision-making.

Current expectations are different, less concerned with bioethical principles like autonomy and more committed to the idea that unless patients are genuine partners in medical decision making, altering the health care delivery system is not likely to succeed. The goal is not to advance patient rights but to transform patterns of care.

More specifically, proponents are committed to promoting patient choice of the most effective treatments and at the same time, reducing health care expenditures.  Two recent articles by Carman and colleagues and Gerber and colleagues in Health Affairs helped spark the reorientation. Through surveys and focus groups, they demonstrated that Americans believe that more medical interventions, newer medical interventions, and more expensive medical interventions bring better results; they also believe that professional guidelines suggesting otherwise are covert attempts to ration care, or in more melodramatic terms, to establish death panels to kill off grandma.

Digging Deeper Into Americans’ Views Regarding Medical Care

Why are Americans so committed to these views?  What presumptions trigger them? To answer these questions, in the Spring of 2012 David Schleifer and I organized a series of focus groups in New York, Chicago, and Atlanta, with participants who were well positioned to make medical choices: they were privately insured, between the ages of 40 and 60, and college educated.

What we found (as presented in PLOS ONE, December 2012) was, first, a strong and shared commitment to the idea that patients must take responsibility for their own health care decisions. Although participants generally trusted their doctors, they recognized that physicians were often under time constraints and might well have financial ties with drug and device companies. Participants did not want to directly challenge medical authority but felt obliged to verify for themselves the wisdom of proposed tests, drugs, and treatments.

To these ends, they not only consulted relatives and friends but also clicked on such websites as WebMD, the Mayo Clinic, and Consumer Reports. They knew very little about the sponsors of these sites; for example, they were unaware that WebMD was for-profit company that received substantial revenue from the drug and device industry. But what they were seeking was information obtained through their own research on whether the physician’s proposed course of action was optimal.

Participants were especially in favor of medical testing and screening. Whether the procedure involved standard blood tests, EKGs, mammograms or PSA screening, it was always preferable to be tested. When we presented them with counter-arguments— including a high rate of false positives and unnecessary biopsies and anxiety— they were unimpressed.  From their perspective, getting a false positive result was a matter of getting good news the second time round. As one participant put it: “A few weeks of stress as opposed to maybe finding lifesaving information? I’ll go through that any day.”

When we asked them about specific recommendations by professional medical societies and the U.S. Preventive Services Task Force that, for example, women between the ages of 40 and 49 should forgo mammograms or that older men might not want to take a PSA test, participants were not merely dismissive but disdainful. To follow such advice was “stupid,” “dumb.” Yes, a test might only save a very small number of lives, but what if one of those lives is yours? These kinds of recommendations, many of them believed, were part of a plot to save money and they refused to give them credence.

Participants were far more suspicions of drugs than tests.  They distrusted pharmaceutical companies, speculating that their doctors had been induced to prescribe more drugs, or were receiving kickbacks. Surprisingly, Direct-to-Consumer advertising reinforced their negative attitudes: the long list of possible side effects in newspaper and television advertising overwhelmed the promises of benefits.  Participants were also mindful that drugs are sometimes withdrawn from the market because of adverse side effects. To avoid directly challenging their physicians, participants told us that they would accept the prescription but not fill it, or they would fill the prescription but not take it.

Relying on conventional methods for publicizing guidelines and disseminating research findings does not appear to be an effective strategy for countering these attitudes. Even when a government-sponsored program makes “patient centeredness” the goal of its outcome research (as in the case of PCORI), and puts aside cost calculations in its evaluations, the public may be wary of the motives and unwilling to act on their findings. Nor is sound research evidence that only one in 500 will benefit from an intervention likely to be determinative– consumers will think of themselves as the possible beneficiary.

Changing these attitudes is still more difficult because the idea to “do more,” has been, and still is, the essential message of many patient advocacy groups. Our focus group participants often cited the advice of cancer groups to be tested early and frequently, and they were unaware that some organizations had recently modified their positions.

The Way Forward

What, then, might be done? First, it is crucial to recognize how high the barrier is to changing public views on health care expenditures and outcome measures. The credentials of investigators and the statistical power of analyses alone are not necessarily effective selling points. Indeed, as important as it is to educate physicians, in the language of the American Board of Internal Medicine, to “choose wisely,” patients may listen respectfully and then go on-line and make their own choices.

Second, we need to explore the types of public messages likely to prove effective and the optimal methods for delivering them. The medium matters. It may be better to give consumers the opportunity to delve into the data themselves rather than rely solely on press stories.  So too, a truly independent patient advocacy group may be more effective in disseminating a message than a government agency.  But the aim here is not to offer precise solutions but to highlight the need to develop fresh ways of communicating outcome and cost data to this new type of consumer/patient.