Access to large amounts of data about care delivery and patient outcomes combined with increased concern for poor quality and high cost have led to the development of what Beth McGlynn, director of Kaiser Permanente’s Center for Effectiveness and Safety Research, recently referred to as the “quality measurement industrial complex.” As the number of measures that physician practices and hospitals are expected to report has increased, so has dissatisfaction and frustration, especially among providers. Although multiple sources of data about provider performance are now publically available as decision aids, very few patients use them, and those who do may find the data confusing and the recommendations inconsistent.
McGlynn spoke at Academy Health’s Annual Research Meeting (ARM) held in Boston in June. There, a host of experts explored the current state of quality improvement and measurement, including Maureen Bisognano and Don Berwick of the Institute for Healthcare Improvement; Lucian Leape of Harvard University; Helen Burstin of the National Quality Forum; Carolyn Clancy of the Department of Veterans Affairs; and ProPublica reporters Marshall Allen and Olga Pierce. Measures that “matter”—versus measures that obscure or simply distract—emerged as an urgent desire among providers and a potentially valuable tool for patients.
In recent years, Bisognano has been urging clinicians to ask patients, “What matters to you?” rather than ask, “What’s the matter?” Turning the question around invites patients to reflect on their preferences and share in decisions about treatment options. It fosters patient-centered care among all members of the team. At ARM, Bisognano said that physicians should be asked what matters to them, too. Observing that physicians tend to view quality as a personal attribute, Leape wishes they viewed it as culture and committed to quality improvement as a “moral dimension of professional life,” not as a series of finite and often annoying projects. Noting that there is “growing toxicity” among clinicians regarding measurement, Burstin joined Leape, Bisognano, and others advocating that physicians be asked, “What matters to you?” as a way to have quality and measurement support them rather than make their work more difficult.
In her presentation, McGlynn explored what patients are looking for in performance data by asking several questions: How do patients make decisions? What do they need for better decision-making? What information would lead to better outcomes? Is what matters to a consumer looking for a provider (e.g., a primary care physician in a new town) the same as what matters to a patient with specific treatment needs (e.g., a cancer patient looking for an oncologist)?
These questions and others lead McGlynn to imagine a world where clinicians and patients can easily access information that’s tailored to their immediate, contextualized needs. Getting there is not primarily a technology project. We need more research about how patients and consumers make decisions, more research that includes patients and consumers in design and execution, more research about differences in health literacy and numeracy, and more research into how different ways of presenting data affect understanding.
McGlynn notes that roughly 20% of the public know that quality reports are available for their use; of that 20%, only 1%–5% actually use the reports in decision-making. That seems unfortunate, but if the information is unhelpful or even counterproductive, it may be just as well.
Allen and Pierce, who developed ProPublica’s Surgeon Scorecard, did the best they could with what they had, including imperfect data. They will soon publish an improved “2.0” version of the scorecard. While their efforts are important and helpful, McGlynn suggests we “redefine success” with quality measures and fundamentally change how data is collected and presented. That will take time, but because measures do matter, they deserve our attention and creativity.