Addressing Barriers to Patient Centered Outcomes Research
Project Title
Addressing Barriers to Engaging Patient & Caregivers Experiencing Critical Illness to Build Capacity for Patient Centered Outcomes Research
Executive Summary
Funding
This project was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EACB-26623)
Project Lead
Ruth Kleinpell PhD RN FAAN; Independence Foundation Chair for Nursing Education; Associate Dean for Clinical Scholarship; Project Co: Lead Marianna LaNoue PhD, Professor
Project Collaborators
- Adair Andrews RN MATD and Susan Lahey PhD RN, Society of Critical Care Medicine
- David Y. Hwang MD, Division Chief – Neurocritical Care and Professor, Neurocritical Care, University of North Carolina School of Medicine
- Carla Sevin, MD, Director, Pulmonary Patient Care Center at Vanderbilt University Medical Center and Director of the ICU Recovery Center
- Leanne Boehm PhD RN Vanderbilt University School of Nursing
Background
The COVID-19 pandemic and resulting limitation in family visitation practices has dramatically changed the way that patients and their family members are able to be recruited and participate in research. As a result, there is an urgent need to identify strategies for involving patients and family members to foster patient centered outcomes research (PCOR).
Project Summary: Building on the research experience of the project team, and working with the Society of Critical Care Medicine (SCCM), a health professions organization with over 16,000 members from more than 100 countries, this initiative will utilize group concept mapping, 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 engaging patients and family members in patient centered outcomes research (PCOR) in the ICU and post-ICU settings.
The project has confirmed 8 members of a Patient and Key Stakeholder Advisory Board including two former ICU patients, three family members, and three ICU clinician/researchers, two physicians and one nurse. The project team will work with the patient and family member stakeholder advisory board to develop an open access website toolkit to strengthen skills for implementing patient-centered research along the continuum of critical illness
Why Is The Research Important?
Engaging patients, families and caregivers in PCOR 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 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.
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