Background: Deciding whether invasive intensive care unit (ICU) treatments should be tried in patients with advanced medical illnesses is challenging. An important gap in codesigning solutions to improve shared decision making (SDM) about using invasive ICU treatments is that patient family partners (PFPs) are unfamiliar with patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER) methodologies while ICU clinicians and researchers are unfamiliar with engaging people with lived experiences.

Proposed Solution to the Problem: The project team will develop a multi-stakeholder research community (PFPs, clinicians, researchers, and healthcare administrators) from two large healthcare systems in Southern California. The research community will participate in activities that promote co-learning in PCOR/CER approaches to improve SDM for ICU patients with advanced medical illnesses. These solutions will incorporate the perspectives of all stakeholders involved in SDM and address key barriers for implementing SDM strategies.

Objectives: The objective of this project is to build the capacity for PFPs, clinicians, healthcare leaders, and researchers to engage in PCOR/CER research aimed at improving communication about invasive ICU treatments for patients with advanced medical illnesses. The specific aims are:

1. Establish a steering committee to guide recruitment, engagement, and training of a multi-stakeholder research community
2. Recruit and engage stakeholders in a research community that examines strategies to improve communication about invasive, potentially non-beneficial ICU treatments for patients with advanced medical illnesses
3. Train members in the community to be active participants in PCOR/CER research that implement and evaluate these strategies in healthcare systems

Activities: A steering committee of clinicians, researchers, healthcare leaders and PFPs will assist in developing the research community (aim 1). The steering committee will support the project team in developing recruitment strategies and training activities for the research community (aim 2). The project team will ensure that the research community reflects the diverse patient population of Los Angeles County. Research training will include PCORI’s Research Fundamentals curriculum and stakeholder cross-training in which PFPs teach researchers/clinicians about community-engagement, and researchers and clinicians teach PFPs about research methodologies (aim 3).

Projected Outcomes and Outputs: 

• Short-term outcomes during the project period include the development of a multi-stakeholder research community with a shared understanding of the barriers for ICU communication and training in community-partnered PCOR/CER. Additional outputs will be a framework for building capacity to improve communication in a diverse community using approaches that prioritize inclusion, equity, and cultural sensitivity.
• Medium-term outcomes (0-2 years post-project period) include the development of stakeholder engaged PCOR/CER projects that test strategies to reduce non-beneficial ICU treatments and improve patient-centered outcomes in ICU care.
• Long-term outcomes (3+ years post-project period) include expansion of the research community to members outside of Los Angeles County and an increase in the number of studies on ICU communication that incorporate multi-stakeholder input.

Patient and Stakeholder Engagement Plan: The stakeholders for this proposal are PFPs, ICU clinicians, healthcare administrators, and researchers. A steering committee will provide stakeholder input to the project team in developing and training the research community. The PCORI engagement rubric will be used in project activities to emphasize reciprocal relationships, colearning, partnership, trust, transparency, and honesty. 

Project Collaborators: The Lundquist Institute at Harbor-UCLA Medical Center, Los Angeles County Department of Health Services, Southern California Kaiser Permanente, Patient & Family Centered-Care Partners