Experts on health care quality improvement put consumers at the heart of the improvement process. Quality cannot be evaluated and enhanced in a significant way without extensive involvement of consumers. But how should we define quality? And how should consumer perspectives be brought into the process?
This column is the third in a series on strengthening the consumer voice in managed care. The first column challenged private-sector programs to emulate public-sector practices for involving consumers in making health plans more accountable for the reasonableness of their policies and practices (1). The second suggested ways to change the standards established by the National Committee for Quality Assurance to foster more robust consumer involvement (2). In this column we describe the Philadelphia Consumer Satisfaction Team and lessons learned from this innovative program about enhancing quality and accountability.
On December 7, 1987, Governor Robert Casey announced the closing of Philadelphia State Hospital—widely known as "Byberry"—in the ringing moral terms that characterized the deinstitutionalization movement: "Today, we're taking action that is both strong and compassionate [to] ensure that Pennsylvanians with mental illness and mental retardation will no longer be left out, left behind, or forgotten" (3). By 1989 the deaths of two former patients and the attempted suicide of another prompted an intensive review of the closure plan (3). As part of the review, Joseph Rogers, who was then president of a consumer organization called Project SHARE, formed under the auspices of the Mental Health Association of Southeastern Pennsylvania, led a team of consumers that made visits to Byberry to interview patients about their needs and wishes for community care. Rogers proposed that consumers could be trained to gather data on the quality of services from users of the care system after the hospital's closure.
Rogers' proposal was the right idea at the right time. Estelle Richman, who was then Philadelphia's director of mental health services and is now the city's managing director, feared that "we might wake up finding that we had put money into the community without accountability." Richman was convinced that "the best way to assess your services is through hearing from consumers and families" (Richman EB, personal communication, Aug 3, 2001). Rogers' and Richman's ideas led to the formation of Philadelphia's Consumer Satisfaction Team in 1990, when Byberry was finally closed.
Consumer Satisfaction Team, Inc., has grown steadily from its initial team of four and a budget of $138,000 to its current staff of about 30 employees and a $2.8 million budget. Its growth has been dynamic, but its mission has been stable. From the start, it had four objectives:
• To promote the satisfaction with mental health and substance abuse services of individual consumers and people in recovery
• To serve as a link between consumers and the government entities that fund these services—the Office of Mental Health, the Coordinating Office for Drug and Alcohol Abuse Programs, and Community Behavioral Health
• To promote the accountability of funders and providers of services to the people who use and depend on these services
• To contribute to an effective and cooperative behavioral health system
In 1997 the Pennsylvania Department of Public Welfare decided to separate, or "carve out," behavioral health services for Medicaid recipients from the health maintenance organizations that were then responsible for such services. Each of the five southeastern counties was allowed to choose between contracting with a private managed behavioral health care organization or forming one of its own. Given its experience in managing the closing of Byberry and the expansion of community-based programs, Philadelphia County chose to form and run Community Behavioral Health, a nonprofit managed care program.
Community Behavioral Health is one of the three prongs of the comprehensive Philadelphia Behavioral Health System. The system brings the Office of Mental Health, the Coordinating Office for Drug and Alcohol Abuse Programs, and Community Behavioral Health under unified management. The objective is to bring together typically fragmented funding streams into a coherent, consumer-centered system. The Consumer Satisfaction Team is a crucial component of the system, from which it derives its annual budget.
In all areas of health care, consumers appear to be most concerned about the perspectives of people like themselves. They want to hear about the care experience throughout an episode of illness, not just about satisfaction with single visits or global satisfaction with a health plan, which are typically the focus of satisfaction surveys (4). Similarly, in the case of Philadelphia—as reflected in Estelle Richman's comments—the city cares most about consumer perspectives in assessing the services it purchases. In accord with this perspective, the Consumer Satisfaction Team engages trained consumers and family members to talk with service users about what they like and dislike about their treatment and to report on what they are told.
The organization sends two-person teams, generally a consumer and a family member, to make unannounced visits to mental health and substance abuse treatment sites, including inpatient and partial hospitalization units, residential programs, clubhouses, crisis centers, detoxification programs, and methadone maintenance clinics. Of the approximately 10,000 consumer interviews conducted in 2000, 53 percent focused on adult mental health care, 37 percent on substance abuse treatment, and 10 percent on child and adolescent services.
The Consumer Satisfaction Team defines its role very carefully: "to report information to the funders and providers of behavioral health services, and not to be an advocate, case manager, or monitor" (5). Reports quote and summarize what the consumers actually say, avoiding interpretation and judgment. The providers we interviewed for this column described the reports as clear, constructive, and respectful. The reports are sent simultaneously to the provider and the purchaser. The Consumer Satisfaction Team meets at least monthly with leaders from Community Behavioral Health and the other components of the Philadelphia Behavioral Health System. A partial list of state and county committees that met with team staff is included in the team's 2000 annual report; the list has 21 entries (7).
Does the team make a difference?
In practical terms, the public purchaser has voted with its purse: the annual allocation contract with the Consumer Satisfaction Team has steadily increased, as has the scope of the site visits. The following vignettes give an admittedly anecdotal picture of the impact of the program.
• Consumer feedback about emergency services revealed dissatisfaction with the gap between mental health and substance abuse components and with the linkages between emergency services and other treatment sites. The emergency system was redesigned with a strong emphasis on shaping it around what consumers wanted. The redesigned system is in its third year of operation, and the changes are generally regarded as meaningful improvements.
• A provider agency was concerned about a deteriorating residential site that it was leasing, and consumer perspectives confirmed this concern. The residential program moved to a new site, and consumers' responses were highly positive. Although the agency had been aware of the problem and had actively been seeking a new site for some time, the initial feedback confirmed its analysis and helped it bring about the beneficial change, which required the financial support of the Philadelphia Behavioral Health System.
• When asked about the impact of consumer feedback, Loretta Ferry, executive director of the Consumer Satisfaction Team, commented: "When we started doing this in 1990, we heard from 90 percent of the people we interviewed that they were not respected. In all the reports, that was [cited as] a need for improvement: 'respect for the consumers who live here.' We never hear that complaint anymore! That is my favorite example."
In a previous column, we argued that consumer participation is vital for heightening a health system's accountability for the reasonableness of its practices and policies by enhancing transparency (making the inside of the black box of managed care visible), by improving deliberation (the give-and-take among stakeholders' perspectives), and by strengthening organizational learning (adopting a try-it-fix-it ethos) (1). Although the Consumer Satisfaction Team contributes to all three components of accountability for reasonableness, its most distinctive lessons pertain to organizational learning.
In many of the efforts to reform managed care, proposals center on the right to appeal and to bring suit. As important as appeals and litigation may be, they suffer from being episodic, inherently adversarial, and narrow in the sense that only a small subset of dissatisfied consumers appeal or sue. In contrast, in the 12 years since its inception, the Consumer Satisfaction Team has developed an approach that is continuous, collaborative, and broad. In 2000 almost 10,000 consumers were interviewed, and their comments were reported. Major sites are regularly revisited, and ongoing interviews are conducted. Most important, all the stakeholders we interviewed for this column exhibited the kind of cooperative and relatively nondefensive spirit that true quality improvement requires.
Although Philadelphia officials, led by Estelle Richman, have shown an extraordinary commitment to the value of consumer perspectives on quality, in principle their approach can be emulated by other public and private programs. It will not be easy, but it's not rocket science. "Voice" requires a speaker and a listener. The Consumer Satisfaction Team has learned to speak clearly and cogently. Providers and the public purchaser listen regularly and carefully. The next two columns in this series will further explore the "speaking" and "listening" functions in efforts to ensure the effectiveness of the consumer voice.
The authors thank Elizabeth Andl-Petkov, Valerie Byrd, Jonathan Delman, Laura Deriggi, Loretta Ferry, Leonard Hoffman, Dorothy Lynch, Lawrence Real, Estelle Richman, Joseph Rogers, Susan Rogers, and Jennifer Tripp for helping them learn more about the Consumer Satisfaction Team concept and the Philadelphia experience. They also thank the Greenwall Foundation, the Open Society Institute Program on Medicine as a Profession, and the Center for Health Care Strategies for their support.
Dr. Sabin, who is editor of this column, is clinical professor of psychiatry at Harvard Medical School and director of the ethics program at Harvard Pilgrim Health Care, 133 Brookline Avenue, Sixth Floor, Boston, Massachusetts 02215 (e-mail, 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.