TY  - JOUR
AU  - Perry, Laura M
AU  - Morken, Victoria
AU  - Peipert, John D
AU  - Yanez, Betina
AU  - Garcia, Sofia F
AU  - Barnard, Cynthia
AU  - Hirschhorn, Lisa R
AU  - Linder, Jeffrey A
AU  - Jordan, Neil
AU  - Ackermann, Ronald T
AU  - Harris, Alexandra
AU  - Kircher, Sheetal
AU  - Mohindra, Nisha
AU  - Aggarwal, Vikram
AU  - Frazier, Rebecca
AU  - Coughlin, Ava
AU  - Bedjeti, Katy
AU  - Weitzel, Melissa
AU  - Nelson, Eugene C
AU  - Elwyn, Glyn
AU  - Van Citters, Aricca D
AU  - O'Connor, Mary
AU  - Cella, David
PY  - 2022
DA  - 2022/9/21
TI  - 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
JO  - JMIR Res Protoc
SP  - e38461
VL  - 11
IS  - 9
KW  - patient-reported outcome measures
KW  - shared decision-making
KW  - medical informatics
KW  - coproduction
KW  - learning health system
KW  - cancer
KW  - chronic kidney disease
AB  - 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. International Registered Report Identifier (IRRID): DERR1-10.2196/38461 
SN  - 1929-0748
UR  - https://www.researchprotocols.org/2022/9/e38461
UR  - https://doi.org/10.2196/38461
UR  - http://www.ncbi.nlm.nih.gov/pubmed/36129747
DO  - 10.2196/38461
ID  - info:doi/10.2196/38461
ER  -