Patients and families reading their discharge summaries: A cross-sectional analysis of benefits, concerns, and implications

Background

Transitioning from hospital to home is fraught with anxiety and risk, as patients and family members assume responsibility for caring for themselves.

Objectives

We aimed to explore patients' experiences with reading their discharge summaries and the impact of having this information during the posthospitalization period. We focus on opportunities to address common concerns—such as medication changes, follow-up steps, and documentation errors.

Methods

An email-based survey of hospitalized patients with portal accounts discharged to home was conducted between May 2022 and February 2023 at two academic health care centers in Boston, MA. We used qualitative and quantitative methods to analyze closed-ended and free-text survey responses. The primary outcomes were patient concerns about medications and the next steps.

Results

Three hundred and ninety-two patients responded (hospital 1 = 321, response rate [RR] = 19.5%; hospital 2 = 71, RR = 4.9%). Patients reported positive effects of reading their discharge summary, including understanding the reason for hospitalization (66.9%) and next steps in managing their care (72.1%), and knowing how to take their medications (74%). Five percent reported a concern about taking a medication and 9.4% had a concern about next steps. In qualitative analysis of patient-reported concerns, the most commonly noted were related to explanations and next steps.

Conclusions

Rapidly spreading information transparency could transform how patients engage in care and communicate with clinicians. Patients and families report benefits from reading discharge summaries; however, over a quarter reported a concern. More work is needed in the inpatient arena to understand how to capitalize on data transparency in a way that benefits patients, families, clinicians, and organizations.