Patient-Reported Outcome Dashboards Within the Electronic Health Record to Support Shared Decision-making: Protocol for Co-design and Clinical Evaluation With Patients With Advanced Cancer and Chronic Kidney Disease

Laura M. Perry*, Victoria Morken, John D. Peipert, Betina Yanez, Sofia F. Garcia, Cynthia Barnard, Lisa R. Hirschhorn, Jeffrey A. Linder, Neil Jordan, Ronald T. Ackermann, Alexandra Harris, Sheetal Kircher, Nisha Mohindra, Vikram Aggarwal, Rebecca Frazier, Ava Coughlin, Katy Bedjeti, Melissa Weitzel, Eugene C. Nelson, Glyn ElwynAricca D. Van Citters, Mary O'Connor, David Cella

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

4 Scopus citations

Abstract

Background: Patient-reported outcomes-symptoms, treatment side effects, and health-related quality of life-are important to consider in chronic illness care. The increasing availability of health IT to collect patient-reported outcomes and integrate results within the electronic health record provides an unprecedented opportunity to support patients'symptom monitoring, shared decision-making, and effective use of the health care system. Objective: The objectives of this study are to co-design a dashboard that displays patient-reported outcomes along with other clinical data (eg, laboratory tests, medications, and appointments) within an electronic health record and conduct a longitudinal demonstration trial to evaluate whether the dashboard is associated with improved shared decision-making and disease management outcomes. Methods: Co-design teams comprising study investigators, patients with advanced cancer or chronic kidney disease, their care partners, and their clinicians will collaborate to develop the dashboard. Investigators will work with clinic staff to implement the co-designed dashboard for clinical testing during a demonstration trial. The primary outcome of the demonstration trial is whether the quality of shared decision-making increases from baseline to the 3-month follow-up. Secondary outcomes include longitudinal changes in satisfaction with care, self-efficacy in managing treatments and symptoms, health-related quality of life, and use of costly and potentially avoidable health care services. Implementation outcomes (ie, fidelity, appropriateness, acceptability, feasibility, reach, adoption, and sustainability) during the co-design process and demonstration trial will also be collected and summarized. Results: The dashboard co-design process was completed in May 2020, and data collection for the demonstration trial is anticipated to be completed by the end of July 2022. The results will be disseminated in at least one manuscript per study objective. Conclusions: This protocol combines stakeholder engagement, health care coproduction frameworks, and health IT to develop a clinically feasible model of person-centered care delivery. The results will inform our current understanding of how best to integrate patient-reported outcome measures into clinical workflows to improve outcomes and reduce the burden of chronic disease on patients and health care systems.

Original languageEnglish (US)
Article numbere38461
JournalJMIR Research Protocols
Volume11
Issue number9
DOIs
StatePublished - Sep 1 2022

Keywords

  • cancer
  • chronic kidney disease
  • coproduction
  • learning health system
  • medical informatics
  • patient-reported outcome measures
  • shared decision-making

ASJC Scopus subject areas

  • General Medicine

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