JMIR Publications

ABSTRACT

Background:

Patient-reported outcomes – symptoms, treatment side-effects, and health-related quality of life (HRQOL) – are important to consider in chronic illness care. The increasing availability of health information technology to collect electronic patient-reported outcomes (ePROs) and to integrate results within the Electronic Health Record (EHR) provides an unprecedented opportunity to support patients’ symptom monitoring, shared decision-making, and effective utilization of the healthcare system.

Objective:

The present study aims to 1) co-design a patient- and clinician-facing ePRO dashboard through the EHR to support shared decision-making and 2) conduct a pre-post demonstration trial evaluating whether the ePRO dashboard is associated with improved shared decision-making and disease management outcomes.

Methods:

Co-design teams comprised of study investigators, patients with advanced cancer or chronic kidney disease, their caregivers, and their clinicians will collaborate to develop the ePRO dashboard. Investigators will work with clinic staff to implement the co-designed ePRO 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 3-month follow-up. Secondary outcomes include pre-post changes in satisfaction with care, self-efficacy in managing treatments and symptoms, health-related quality of life, and utilization of costly and potentially avoidable healthcare services. Implementation outcomes (i.e., fidelity, appropriateness, acceptability, feasibility, reach, adoption, and sustainability) during the co-design process and demonstration trial will also be collected and summarized.

Results:

The ePRO dashboard co-design process was completed, and data collection for the demonstration trial is in progress. Study outcomes will be available for evaluation in Spring 2022. Results will be disseminated in manuscripts on process and implementation outcomes of the demonstration trial and co-design process.

Conclusions:

This protocol combines stakeholder engagement, healthcare co-production frameworks, and health information technology to develop a clinically feasible model of person-centered care delivery. Results will inform our current understanding of how best to integrate ePROs into clinical workflows to improve outcomes and reduce the burden of chronic disease on patients and healthcare systems.