Despite patient-centered care being identified by the National Academies of Sciences, Engineering, and Medicine (formerly known as the Institute of Medicine) as one of the drivers of a learning health system, there is little known about how patients relate to efforts to reduce use of low-value care and de-implementation. The majority of recent efforts to facilitate reduction of potentially harmful practices has focused on clinician behavior change, with little attention to patient perceptions. A previous post in this series urged the research community to describe de-implementation as a routine and expected process of the learning health care system. But, researchers, clinicians, and policymakers must engage in this important work with an understanding of patients’ priorities and how they impact the causes and solutions to the use of low-value care. The patient experience of de-implementation is critically understudied, and we must address this dearth of information and more fully engage patients and their caregivers in the de-implementation process.
While there is a paucity of evidence in this area, there is a small number of studies investigating the role and perspective of the patient in de-implementation efforts, including how patients perceive and understand de-implementation efforts from which we can glean insight. Schlesinger and Grob found that one-third of Americans have difficulty envisioning the benefits of avoiding low-value care, a number that increases to one-half for respondents with lower education levels and minority respondents. A systematic review of studies that quantitatively assess patients’ expectations of the benefits and/or harms of any treatment or test found that the majority of patients overestimated the benefits and underestimated the harms. This finding is echoed in a recent study exploring patient attitudes about overuse of low-value care, which found enthusiastic endorsement of testing and screening as ways to actively engage in and responsibly protect individual health. While patient engagement in their health and health care is desirable, patient understanding of true risks and benefits of some types of preventive care services may be significantly impacted by the overselling of benefits and underplaying of risks—for example, computed tomography full body scans for cancer screening. Patients may also perceive efforts to de-implement or reduce low-value care as cost-cutting measures that result in “bargain-basement” care. Misunderstanding of commonly used terminology around clinical quality guidelines and low-value care (e.g., “evidence-based”, “quality standards”) may also contribute to perceptions that national quality guidelines (e.g., United States Preventive Services Task Force guidelines) are designed to help government payors save money rather than improve care and patient outcomes.
It is also possible that cognitive biases play a role in patient perceptions of low-value care and resistance to de-implementation. For example, a recent study of U.S. women age 35-55 using breast cancer screening as case to assess women's awareness of and reactions to statements about overdiagnosis and overtreatment found that women with a recent mammogram history were particularly unconvinced by overdiagnosis and overtreatment arguments. Although unexplored, cognitive biases such as sunk cost fallacy and loss aversion could be driving these perceptions. These types of biases have been acknowledged in efforts at the clinician level to de-implement low-value care. Future work on the patient perspective should include investigation of these issues.
One area that contradicts these findings is the area of medication. Numerous studies found that patients were aware of the harms of overmedicating and were more amenable to recommendations to reduce low-value medications than they were recommendations to reduce testing or screening procedures. A recent U.S. study found that participants had little trust in pharmaceutical companies, which one individual described as ‘‘out for your money’’. Side effect and symptom experience with medications may also play a role in willingness to de-implement unnecessary medications.
These results seem to suggest that broader educational efforts are needed to better inform patients to the potential harms of tests and treatments, and the benefits of reducing low-value care. However, studies have shown that patients can have negative reactions to educational de-implementation efforts. The same study that found that one-third of Americans did not understand the benefits of avoiding low-value also found that many respondents had negative views of providers who suggested avoiding low-value care. A focus group of older adults on the concept of overuse found that even though virtually all reported experiencing overuse, some perceived overuse to occur within the context of not receiving appropriate care.13 For example, they believed overuse occurred when the intervention was discordant with their symptoms or preferences and believed there may have been alternative interventions.
A common theme throughout this small but growing body of work is the need for improved patient-provider communication and trust. Currently, multiple unintended consequences of de-implementation may fall disproportionately on patients, including increased distrust of the health care system and questioning of underlying motives of de-implementation. Our poor understanding of the patient perspective and failure to include patient stakeholders in the majority of efforts to de-implement low-value care is jeopardizing our ability to meaningfully engage with patients. We need research-driven approaches to improve communication and education regarding harms of overtesting and overtreatment that recognize and incorporate the patient’s perspective to address these issues.
This four-part blog series is a product of a thematic working group on de-implementation convened by AcademyHealth and the ABIM Foundation as part of the Research Community on Low-Value Care. Access the first post in the series focused on viewing de-implementation as part of a learning health system [link].