It is no great stretch to allow that “consumers” may have an important role to play in health economics. After all, it was a market response by premium payers that forced the insurance industry to back away from tightly managed care in the late 1990s. Nor is the idea of patient-centered care merely an idealistic mirage. Real clinical results have demonstrated convincingly that engaged patients can achieve better outcomes as partners with service providers than as passive objects of treatment.
But the policy community understands, and pardons with an ironic wink, the gamesmanship involved in labeling as “consumer-directed health care” those recent insurance benefit redesigns that increase deductibles and patient cost sharing. When did consumers ever stand up and demand that they be allowed to pay more when they are sick?
Ambiguities have swirled around the notion of consumerism in health care at least since the 1970s, when federal policy embraced the concept of “maximum feasible participation” of citizens in health care planning and governance, among other domains. “Informed consent” became the law of the land during that same decade of diminished acceptance of professional authority, and “shared decision making” entered the lexicon of bioethics at about the same time. But as often as not, doctors, hospital administrators, and planning agencies had their fingers crossed behind their backs when uttering these pieties, and the legacy of paternalism lingered on.
Unresolved questions about the meaning of consumer engagement in the health sphere surfaced Monday in a lively conversation among health services researchers at the AcademyHealth Annual Research Meeting in Washington. Panelists at a conference workshop on the Robert Wood Johnson Foundation’s “Aligning Forces for Quality” project outlined plans to convene stakeholder collaboratives in fourteen communities to promote, among other things, increased consumer involvement in efforts to measure, report, and improve the quality of health services. The theory, to paraphrase session chair Judith Hibbard of the University of Oregon, is that consumer demand may be one of the most powerful instruments in the policy toolbox to drive better performance.
The long-term, $300 million Aligning Forces project, which will be discussed more fully in the GrantWatch section of the September/October issue of Health Affairs, is chock full of appealing initiatives and already set to begin moving from the planning to the implementation phase. But the AcademyHealth scholars at this month’s meeting displayed a healthy skepticism about what genuine consumer engagement ought to mean.
Panelist Shoshanna Sofaer of the City University of New York bluntly described the term “consumer empowerment” as an oxymoron, because of the implication that if power could be bestowed on a consumer, it could equally well be taken away. In general, Sofaer said, as matters now stand, “consumers have no voice” in the workings of the health system. Her view was seconded by Ed Mendoza of the California Office of the Patient Advocate, who suggested that consumers have little or nothing in common with powerful “stakeholder” groups. Inviting consumer representatives or advocates to participate in a stakeholder collaborative could amount to little more than tokenism. True consumer activism is more likely to begin with a negative reaction to what incumbent stakeholders are doing, Mendoza said.
The RWJF’s Michael Painter said that consumers — “real people” — and consumer advocates are a “critical part” of the Aligning Forces project. Project evaluator Dennis Scanlon of Penn State acknowledged that involving consumers meaningfully is a real challenge. Health professionals often doubt the ability of consumers to understand the complexities of the system. Labor groups, advocacy shops, and patient organizations may afford channels of connection, but Scanlon said that project planners are “wrestling” with the difficulties of engaging consumers and that “it’s not obvious how you do that.”
Let the conversation continue. There is substantial historical evidence that consumer activism usually begins, as Mendoza said, as a negative reaction and that it may be unrealistic to expect the independent interests of consumers to align with those of payers, providers, public officials, and other stakeholders. The women’s health movement heralded in the 1973 publication of Our Bodies, Ourselves was a grassroots reaction against physician paternalism that played a large role in shaping a transformational feminist movement. AIDS activism, the disability rights movement, and consumer activism in mental health all arose from the spontaneous and independent self-assertion of consumer populations fighting for their own objectives; and all achieved far-reaching impact.
Although individual patients experience the health system’s quality shortcomings directly, it will not be easy to engage consumers around strategies to transform care processes and refine payment incentives. Cost and access problems seem intuitively more likely to generate the next wave of activism in health care, if there is to be one. Union-led campaigns against Wal-Mart’s employee benefit practices seem to have achieved some traction recently. A realistic drive for universal coverage might stir voters, advocates, and grassroots organizers. But effective consumer activism in health care has been only fitful and sporadic in the past. The potential is undoubtedly great, but genuine empowerment will be difficult to summon up with conventional policy interventions.