Addressing Barriers to Engaging Patient & Caregivers Experiencing Critical Illness to Build Capacity for PCOR

Background: Engaging patients, families and caregivers in patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER) during and after a critical illness is essential to ensure that research questions that matter are being asked, and that outcomes that matter are being measured. However, research engagement in the intensive care unit (ICU) and post-ICU context is inherently challenging and the impacts of the COVID-19 pandemic have dramatically changed the way that patients and their family members are able to be recruited and to participate in research. There is an urgent need to identify strategies for involving patients and family members in research related to ICU care and outcomes. 

Proposed Solution to the Problem: Building on the research experience of the project team, this initiative will identify and disseminate strategies that can be used for overcoming barriers to patient- and family-centered CER with patients who were critically ill and hospitalized in an ICU setting, in order to increase capacity for PCOR/CER in the ICU and post-ICU settings.

Objectives: The primary objectives are to:

1. Utilize group concept mapping (GCM), which is used to gather input from patients, family members, healthcare clinicians, researchers and others, to identify strategies that can be used for overcoming barriers to PCOR/CER. 
2. Use this data to develop an educational toolkit to build capacity for PCOR/CER for healthcare clinicians and researchers.

Activities: The aims of the project include:

• Aim 1: Conduct group concept mapping with ICU patients and family members as well as healthcare researchers and clinicians to elicit strategies for research engagement. 
• Aim 2: Develop an open-access website toolkit to strengthen skills for implementing PCOR along the continuum of critical illness.
• Aim 3: Broadly share the results of the project through collaborators the Society of Critical Care Medicine (SSCM) and through scholarly products, conference presentations, educational sessions, email communications, newsletter and other published information, and social media.  

Projected Outcomes and Outputs: 

• Short-term outcomes during the project period: The overall intended outcome is a significant contribution to the evidence base for strategies to conduct stakeholder engaged PCOR/CER in the ICU and post-ICU context. In the short term, this goal will be accomplished by using the GCM to gather input from patients, family members, healthcare clinicians, researchers and others to identify strategies that can be used for overcoming barriers to PCOR/CER. An open-access website toolkit that details the identified strategies will also be developed and published.
• Medium-term outcomes (0-2 years post-project period): Results will be widely publicized through a multi-level dissemination strategy via a social media campaign that includes the SCCM Discovery network, SCCM’s robust communication network. A minimum of one  manuscript will be published. 
• Long-term outcomes (3+ years post-project period): An educational session will be developed for SCCM’s annual Congress, attended by over 7,000 ICU clinicians and researchers.

Patient and Stakeholder Engagement Plan: The project team is committed to partnering with patients, their family members and clinical and research stakeholders in a way that embodies the PCOR engagement principles of reciprocal relationships, co-learning, partnership, trust, transparency and honesty. The Patient and Key Stakeholder Advisory Board (PAKSAB) includes ICU patients and family members as well as clinical and research stakeholders. They have been actively engaged in the planning of this project and made valuable contributions to its inception and design. The PAKSAB will meet quarterly to review and provide input on the ongoing project components and their evaluation, review the GCM results from the successive data collection iterations and review and approve the final Toolkit. With ongoing feedback from the PAKSAB, the project team will refine plans for and implement dissemination and monitor its progress.
 
Project Collaborators: In addition to project partners, SSCM and the PAKSAB, there is a robust collaborative network in place to facilitate successful implementation of the project and dissemination of the results. These are: 

1. The PCORNet Coordinating Center of the National Patient-Centered Clinical Research Network at VUMC.
2. The Stakeholder, Technology and Research (STAR) Clinical Research Network.
3. The Critical and Acute Illness Recovery Organization.

All of these will serve as resources for recruitment and dissemination.