We Want to Know: Eliciting Hospitalized Patients’ Perspectives on Breakdowns in Care

There is growing recognition that patients and family members have critical insights into healthcare experiences. As consumers of healthcare, patient experience is the definitive gauge of whether healthcare is patient centered. In addition, patients may know things about their healthcare that the care team does not. Several studies have demonstrated that patients have knowledge of adverse events and medical errors that are not detected by other methods.^1-5 For these reasons, systems designed to elicit patient perspectives of care and detect patient-perceived breakdowns in care could be used to improve healthcare safety and quality, including the patient experience.

Historically, hospitals have relied on patient-initiated reporting via complaints or legal action as the main source of information regarding patient-perceived breakdowns in care. However, many patients are hesitant to speak up about problems or uncertain about how to report concerns.^6-8 As a result, healthcare systems often only learn of the most severe breakdowns in care from a subset of activated patients, thus underestimating how widespread patient-perceived breakdowns are.

To overcome these limitations of patient-initiated reporting, hospitals could conduct outreach to patients to actively identify and learn about patient-perceived breakdowns in care. Potential benefits of outreach to patients include more reliable detection of patient-perceived breakdowns in care, identification of a broader range of types of breakdowns commonly experienced by patients, and recognition of problems in real-time when there is more opportunity for redress. Indeed, some hospitals have adopted active outreach programs such as structured nurse manager rounding or postdischarge phone calls.⁹

It is possible that outreach will not overcome patients’ reluctance to speak up, or patients may not share serious or actionable breakdowns. The manner in which outreach is conducted is likely to influence the information patients are willing to share. Prior studies examining patient perspectives of healthcare have primarily taken a structured approach with close-ended questions or a focus on specific aspects of care.^1,10,11 Limited data collected using an open-ended approach suggest patient-perceived breakdowns in care may be very common.^2,12,13 However, the impact of such breakdowns on patients has not been well characterized.

In order to design systems that can optimally detect patient-perceived breakdowns in care, additional information is needed to understand whether patients will report breakdowns in response to outreach programs, what types of problems they will report, and how these problems impact them. Understanding such issues will allow healthcare systems to respond to calls by federal health agencies to develop mechanisms for patients to report concerns about breakdowns in care, thereby providing truly patient-centered care.¹⁴ Therefore, we undertook this study with the overall goal of describing what may be learned from an open-ended outreach approach that directly asks patients about problems they have encountered during hospitalization. Specifically, we aim to (1) describe the types of problems reported by patients in response to this outreach approach and (2) characterize patients’ perceptions of the impact of these events.

Setting

We conducted this study in 2 hospitals between June 2014 and February 2015. One participating hospital is a large, urban, tertiary care medical center serving a predominantly white (78%) patient population in Baltimore, Maryland. The second hospital is a large, inner city, tertiary care medical center serving a predominantly African-American (71%) patient population in Washington, DC.

Three medical-surgical units (MSUs) at each hospital participated. We selected MSUs because MSU patients interact with a variety of clinicians, often have long stays, and are at risk for adverse events. Hospitalists were part of the clinical care team in each of the participating units, serving either as the attending of record or by comanaging patients.

Patient Eligibility

Patients were potentially eligible if they were at least 18 years old, able to speak English or Spanish, and admitted to the hospital for more than 24 hours. Ineligibility criteria included the following: imminent discharge, observation (noninpatient) status, on hospice, on infection precautions (for inpatient interviews only), psychiatric or violence concerns, prisoner status, significant confusion, or inability to provide informed consent.

Eligible patients in each unit were randomized. Interviewers consecutively approached patients according to their random assignment. If a patient was not available, the interviewer proceeded to the next room. Interviewers returned to rooms of missed patients when possible. Recruitment in the unit ended when the recruitment target for that unit was achieved.