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

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. International Registered Report Identifier (IRRID) DERR1-10.2196/38461

Global use of electronic patient-reported outcome systems in nephrology: a mixed methods study

“…However, systems were implemented across kidney disease stages and treatment modalities (see table 1 and online supplemental file 4 for additional system data). Aggregate uses of ePROs for benchmarking or commissioning of services were not common; one system collected satisfaction with care data39 and two others assessed quality of care 21 40. There was variation in funding source; academic (40%), government (30%) and charitable funding (30%), with 70% of systems being developed in the last 5 years.…”

“…Systems allowed ePROs to be completed in different settings; the most common setting for completion was hospital clinic (80%). Only one system could be accessed by primary care 40…”

Systematic review of co-design in digital health for COVID-19 research

“…The idea is based on entailing the participation of stakeholders and end-users in various stages of the development cycle of a solution or service using specific techniques (i.e., interviews, surveys, focus groups, brainstorming sessions, co-creation workshops, iterative designs, etc.). In this context and based on [ 58 , 59 ], a wide range of various researches are currently available and function for digital health care, we will detail, as shown in Table 4 . The main aspects that deal with the co-design principles include: Establishing co-creation There exists a group that helps coordinate contributions by different partners; Engaging the stakeholders There exists a group of providers that facilitates induction within the context of their work; Offering open data Working with a user-friendly interface for inputting data by participants; Sustaining the software or service Identifying stakeholders who are able to sustain and improve the services.…”

Implementing a Patient-Reported Outcome Dashboard in Oncology Telemedicine Encounters: Clinician and Patient Adoption and Acceptability

“…Before this study, the oncology PRO dashboard was designed through a series of codesign sessions that included patients, care partners, clinicians from several disciplines, and health system leaders. 21 The dashboard compiles patient-generated data (PROs and patient goals) with clinical data into a single tab in the electronic health record (EHR) (Fig 1). Patients respond to two types of questions: prompted questions (my visit goals and well-being and my health goals) and PROs of interest (Appendix Table A1, online only).…”

“…[16][17][18][19][20] To increase adoption of PROs at our center, we developed an oncology PRO dashboard codesigned by a diverse group of stakeholders that was intended to launch in March 2020. 21 The dashboard compiles patient-generated data (PROs and patient goals) and relevant clinical data into the electronic health record. 22,23 The dashboard aims to align clinicians and patients to patient preferences and health status to facilitate shared decision making (SDM).…”