According to some prominent health policy analysts, the unique American managed care system, which asks competing insurers and market forces to reorganize health delivery and constrain costs, is on its way out (1). To do better in the future, whether in an evolving managed care system or under some new framework, we must identify the key policy lessons from the waning national strategy of third-party (insurer) management. One lesson is the need to strengthen the consumer's voice in overseeing health policy and practice in whatever system comes next.
For consumers to have a meaningful oversight role, three conditions must be met. First, the consumer community must be skillful at "giving voice" to its values (2,3). Second, the organizational environment must support a robust consumer role by "transmitting" the consumer perspectives to points in the organization where they can exert influence (4,5). Finally, the professionals who manage the program must be adept at "listening." This third condition is the focus of this column.
We draw on interviews with consumer activists, managed care staff, and public-sector administrators that focused on the question "What helps organizations and professionals be better listeners to consumers with regard to policy and practice?" The interviews pointed to three major factors—structural supports, innovative education, and leadership.
The most direct structural approach to strengthening an organization's skills at listening to consumers is to bring consumers onto the staff of the organization. This approach has been applied most extensively in public mental health systems, typically by establishing an Office of Consumer Affairs. The National Association of Consumer/Survivor Mental Health Administrators cites six criteria for a successful office: consumers must be part of the planning and hiring; the office must be directed by a self-identified consumer; the director must be part of the senior management team; there must be adequate support; the consumer must serve as a change agent; and the consumer's presence on the team must not diminish the degree to which other senior managers interact with consumers (6).
Hiring consumers is a high-risk- high-gain process. To work well it requires skillful consumer employees and committed organizational leadership. One consumer with long experience in organizational roles commented that "if an organization has designated only one person to communicate with consumers and the top management isn't involved, the role is probably a waste of time and a setup for failure." Another observed, "We shouldn't be surprised that stigma is inside of mental health organizations as well as outside. That can make our roles as self-identified consumers very difficult." A third added, "You can be the vessel of the consumers but not the voice…. You have to advocate to have consumer voices at the table again and again."
All mental health disciplines have devised techniques to teach clinicians how to be effective listeners in clinical practice. The best training programs provide extensive opportunity to learn, practice, and improve. Much less has been done, however, to help clinicians and administrators become effective listeners to consumers in managerial settings.
Administrators are accountable for their programs, but to achieve success they must collaborate with consumers and other stakeholders. Such collaboration is often new territory for all stakeholders. We believe that innovative educational techniques will be required to develop the needed skills and attitudes. Educative dialogues and use of alternative dispute resolution techniques are two promising approaches. During our interviews for this column, representatives from a number of organizations told us about using variants of what we call educative dialogue, modeled on a set of pilot projects conducted by the federal Center for Mental Health Services. In educative dialogue, consumers and professionals meet in an extended discussion focused on defined goals but maximally open in process. As an example, the center convened a two-day meeting for 21 consumers and psychiatrists July 24 to 25, 1997. A planning group of consumers and psychiatrists set three goals: to develop better mutual understanding and respect between the consumers and psychiatrists in attendance, to develop a set of recommendations for improving consumer-psychiatrist partnerships, and to prepare and distribute a monograph summarizing the outcomes of the meeting (7).
Educative dialogues combine elements of the "T groups" prevalent in the 1950s and 1960s with quality improvement circles of the 1990s. They are like T groups in their encouragement of open, exploratory conversation and the value they place on heightened self-awareness and interpersonal understanding. They are like quality improvement circles in their focus on using improved collaboration between professionals and consumers to reengineer processes to improve outcomes.
Alternative dispute resolution techniques, especially mediation, are beginning to be used in health programs to avoid litigation (8). In 2000 the William and Flora Hewlett Foundation funded a Collaborative for Conflict Management, based in the Louis de la Parte Florida Mental Health Institute at the University of South Florida. Among other services, the collaborative provides training in conflict management skills to mental health organizations and their consumer constituents. Andrea Blanch, director of the collaborative, commented that in addition to providing specific skills, "when you learn to apply the alternative dispute resolution lens it can shift the culture of an organization. Conflict is a part of life. If everyone has a chance to tell their story it can lead to new resolutions."
Because virtually all discussions of successful leadership include injunctions to "listen to consumers," and because psychiatry has had an elegant model of a "customer approach to patienthood" (9) since 1975, we asked the interviewees to express their views about what impeded energetic listening to consumers.
Consumers identified two major barriers among mental health professionals that interfered with robust collaboration around policy and practice: pessimism about consumers' capacities and a tendency to think narrowly about "treatment," not broadly about "potential for recovery." "I know we can sometimes be strident or obnoxious," one consumer commented, "but I wish more providers thought we were fun to be around." Another added, "I know they are under tremendous time pressure, but it isn't that hard to ask us what we hope for, care most about, and dream of."
Organizational leaders told us that the greatest barriers to drawing consumers into collaborative deliberation about policy and practice are "the straitjacket of expertise" and "the tendency to keep our heads down and stay in our own silos." Health professionals—clinicians and administrators—are socialized to cultivate expert knowledge and take responsibility. Moving from a stance of expertise to one of inquiry and exploration can be very difficult, especially in a fast-paced environment that can be unforgiving. As one organizational leader commented: "There is a natural tendency not to want to identify and then address when our systems are not working well. System change is always difficult. We have been trained that consumers are ill and don't have solid judgment. Being open to criticism and self-evaluation makes our difficult jobs even harder. Sometimes you can't appreciate an issue until you have your nose rubbed into it!"
Policy analysts offer many explanations for the national backlash against managed care, but surely the relative absence of consumer participation in shaping managed care policies and practices plays a considerable role.
On the basis of extensive research on fairness in resource allocation (10), we are convinced that consumer participation can make three key contributions to fairness and acceptability in managed care or any other health system that sets priorities and limits. First, involving consumers contributes to transparency. The public is less likely to trust secretive organizations than organizations that relate to their constituencies openly. Second, when consumers give voice to the values that matter to them, deliberation about policy and practice is improved. Finally, because quality improvement must be constant and ongoing, regular feedback about how consumers assess the impact of policies and practices as they play out on the ground is a necessity. The 12-year history of the Philadelphia Consumer Satisfaction Team (2) shows that this kind of ongoing feedback is not pie in the sky.
Public agencies that purchase managed care—most commonly state Medicaid offices—are subject to public scrutiny through the democratic political process. These agencies have strong traditions of transparency and citizen participation, and the best state and county programs require the managed care programs they contract with to listen to consumer voice (11). Corporate purchasers of health care, however, are not subject to the same fiduciary requirements that apply to public purchasers. We are not aware of any corporate purchasers demanding that their managed care vendors provide the kind of active listening to consumers that the best public purchasers expect.
This series of columns has presented a practical three-part model for strengthening consumer oversight of health care policy and practice: consumers with skill at giving voice, organizational structures that support collaboration between consumers and professionals, and professionals with skills and attitudes that foster listening. The columns have presented practical examples that illustrate how all three components of the model can be applied.
Consumers will and should insist on robust participation in shaping their health care system. No system that makes choices and sets priorities will be accepted as legitimate without strong and effective consumer voice. The U.S. experiment with managed care has provided ample lessons on how health organizations can incorporate consumers into the management process. There is no excuse for not applying these lessons widely, whether in the present managed care system or the system or systems that will follow.
The authors thank Laurie Ansorge-Ball, Moe Armstrong, Larry Belcher, Andrea Blanch, Vicki Cousins, Paolo Delvecchio, Loretta Ferry, Larry Fricks, David Gettys, Robert Glover, William Goldman, Steve Holochuck, Karen Kangas, Ed Knight, Kathy Muscari, Miles Shore, Kenneth Thompson, and Jennifer Tripp, and others who preferred not to be cited, for their help. They also thank the Open Society Institute Program on Medicine as a Profession for its support.
Dr. Sabin, who is editor of this column, is clinica professor of psychiatry at Harvard Medical School and director of the ethics program at Harvard Pilgrim Health Care, Department of Ambulatory Care and Prevention, 133 Brookline Avenue, Sixth Floor, Boston Massachusetts 02215 (firstname.lastname@example.org);. Dr. Daniels is Goldthwaite professor in the department of philosophy at Tufts University in Medford, Massachusetts, and professor of medical ethics in the department of social medicine at Tufts Medical School in Boston.