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.
cancer
chronic kidney disease
coproduction
learning health system
medical informatics
patient-reported outcome measures
shared decision-making
Journal
JMIR research protocols
ISSN: 1929-0748
Titre abrégé: JMIR Res Protoc
Pays: Canada
ID NLM: 101599504
Informations de publication
Date de publication:
21 Sep 2022
21 Sep 2022
Historique:
received:
04
04
2022
accepted:
31
07
2022
revised:
18
07
2022
entrez:
21
9
2022
pubmed:
22
9
2022
medline:
22
9
2022
Statut:
epublish
Résumé
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. 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. 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. 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. 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. DERR1-10.2196/38461.
Sections du résumé
BACKGROUND
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
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
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
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
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)
UNASSIGNED
DERR1-10.2196/38461.
Identifiants
pubmed: 36129747
pii: v11i9e38461
doi: 10.2196/38461
pmc: PMC9536520
doi:
Types de publication
Journal Article
Langues
eng
Pagination
e38461Subventions
Organisme : NIDDK NIH HHS
ID : P30 DK092949
Pays : United States
Organisme : NCI NIH HHS
ID : T32 CA193193
Pays : United States
Organisme : NCATS NIH HHS
ID : UL1 TR001422
Pays : United States
Informations de copyright
©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 Elwyn, Aricca D Van Citters, Mary O'Connor, David Cella. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 21.09.2022.
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