Developing a Patient- and Family-Centered Research Agenda for Hospital Medicine: The Improving Hospital Outcomes through Patient Engagement (i-HOPE) Study.

Abstract

Patient, caregiver, and other stakeholder priorities have not been robustly incorporated into directing hospital-based research and improvement efforts. To systematically engage stakeholders to identify important questions of adult hospitalized patients and to create a prioritized research agenda for improving the care of adult hospitalized patients. A collaborative approach to stakeholder engagement and research question prioritization. Researchers and patients from eight academic and community medical centers partnered with 39 patient, caregiver, professional, research, and medical organizations. We applied established standards for formulating research questions and stakeholder engagement. This included: a multi-pronged, inclusive patient and stakeholder engagement strategy; surveys of patients and stakeholder organizations to identify important questions; content analysis of submitted questions; and a 2-day in-person meeting with stakeholder organization representatives and patient partners to prioritize and rank submitted questions. A total of 499 respondents including patients, caregivers, healthcare providers, and researchers from 39 organizations submitted 782 research questions. These questions were categorized into 70 distinct topics-52 that were health system related and 18 disease specific. From these categories, we identified 36 common questions; the final 11 questions were identified, prioritized and ranked during an in-person priority-setting meeting. Questions considered highest priority related to ensuring shared treatment and goals of care decision making and improving hospital discharge handoff to other care facilities and providers. We identified 11 prioritized research questions that should galvanize funders, researchers, and patient advocates to address and improve the care of hospitalized adult patients.