Journal Article

Development of an electronic health record-integrated patient-reported outcome-based shared decision-making dashboard in oncology

Lyleroehr, Madison, Chmiel, Ryan, Garcia, Sofia F, Barnard, Cynthia, Kircher, Sheetal, Mohindra, Nisha A, Hirschhorn, Lisa R, Morken, Victoria, Perry, Laura M, Coughlin, Ava, Cella, David

2024

Overview

Objectives Patient-reported outcomes (PROs) describe a patient’s unique experiences with disease or treatment, yet effective use of this information during clinical encounters remains challenging. This project sought to build a PRO based dashboard within the electronic health record (EHR), prioritizing interpretability and utility of PROs for clinical decision-making. Materials and Methods Codesign principles were used to define the goal, features, and visualization of the data elements on the dashboard. Codesign sessions occurred between February 2019 and May 2020 and involved a diverse group of stakeholders. Pilot evaluation of dashboard usability was performed with patients and clinicians not involved in the codesign process through qualitative interviews and the Systems Usability Scale. Results The dashboard was placed into a single tab in the EHR and included select PROM scores, clinical data elements, and goals of care questions. Real-time data analytics and enhanced visualization of data was necessary for the dashboard to provide meaningful feedback to clinicians and patients for decision-making during clinic visits. During soft launch, the dashboard demonstrated “good” usability in patients and clinicians at 3 and 6 months (mean total SUS score >70). Discussion The current dashboard had good usability and made PRO scores more clinically understandable to patients and clinicians. This paper highlights the development, necessary data elements, and workflow considerations to implement this dashboard at an academic cancer center. Conclusion As the use of PROs in clinical care is increasing, patient- and clinician-centered tools are needed to ensure that this information is used in meaningful ways. Lay Summary Decisions related to cancer care include multiple considerations, such as a patient’s current clinical status and goals of care. Patient-reported outcomes (PROs) reflect the patient’s unique experience of disease and treatment effects. However, there still exists considerable uncertainty regarding how to effectively use patient-reported information during clinical encounters. Here, we describe the development of a shared decision-making oncology dashboard, centered around the interpretability and use of PRO measures (PROMs) by both patients and clinicians in clinical decision-making. Codesign principles were utilized to define the goal, relevant features, and visualization of the data elements on the dashboard. Patients, care partners, clinicians, social workers, palliative care specialists, psychologists, and experts in health information systems were involved in the codesign process. One key feature of the dashboard is that real-time data analytics and visualization of data can be performed on PROMs and clinical inputs (labs, vitals, medications) and that these data elements can be trended over time to provide feedback to clinicians and patients about effectiveness of their shared-decisions, enabling a patient-centered learning health system. This paper describes the development process for the dashboard, results from early usability testing, and operational changes that were needed to launch this tool in oncology care.

• Publisher: Oxford University Press
• Subject: Analysis / Decision making / Electronic health records / Electronic records / Medical informatics / Medical records / Palliative treatment / Patients / Research and Applications / Shared decision making / Social workers / Usability / Usability testing / Visualization (Computers)