Project Summary

Background: Pulmonary fibrosis (PF) is a rare, progressive, irreversible lung disease, making it challenging to involve patients in research. Despite these difficulties, patients are willing to engage in patient-centered outcomes research (PCOR)/comparative clinical effectiveness research (CER). However, few opportunities exist for engagement. The goal of the project is to convene stakeholders to determine priorities for and create opportunities in PCOR/CER in PF.

Proposed Solution to the Problem: This project builds upon a previous capacity building project that educated PF patients and care partners about the value of patient engagement in PCOR/CER. The current project will convene patients, care partners, clinicians and researchers to explore potential PCOR/CER topics, prioritize research questions and organize stakeholders into workgroups to initiate research. Convening will take place virtually, with asynchronous and synchronous opportunities for participation, and is open to community members nationwide.

Objectives: The goal of the project is to create a research roadmap to facilitate the initiation and development of PCOR/CER in PF.

The specific objectives are: 

  1. To generate a list of PCOR/CER topics that are most important to PF stakeholders, including patients and care partners. 

  2. To establish sustainable patient-researcher partnerships to pursue specific research topics.

Activities:

Phase 1 (pre-convening) activities have participants engage independently, asynchronously, prior to convening to complete two rounds of surveys to generate, categorize and rank research ideas. Phase 2 includes a live, synchronous, virtual convening event to discuss, further prioritize research ideas and come to consensus. 

Phase 3 (post-convening) includes surveys to evaluate the experience and formation of workgroups to help advance research ideas to their next steps.

Projected Outcomes and Outputs:

Short-term outcomes during the project period include: 

  1. A list of all the generated ideas.

  2. A prioritized list according to specific criteria.

  3. A list of workgroups consisting of patients and researchers for incubating specific research ideas. These will provide a roadmap for future PF research, specifically PCOR/CER.

Medium-term outcomes (0-2 years post-project period) are the initiation of PCOR/CER projects that align with stakeholder priorities. These will increase the quantity and breadth of PF PCOR/CER being conducted.

Long-term outcomes (3+ years post-project period) include results from PCOR/CER that are meaningful to those whom the studies intend to serve. These will improve the quality of life of patients and families impacted by PF.

Patient and Stakeholder Engagement Plan: A planning committee comprised of patients/care partners, clinicians and advocacy organization representatives will meet with project staff eight times during the project period to provide input at every stage of the project. Additional relevant stakeholders may participate on an ad-hoc basis, providing input at key points.

Project Collaborators: The project is being co-led by researchers at Temple University College of Public Health and the Wescoe Foundation for Pulmonary Fibrosis and supported by Pulmonary Fibrosis Foundation, PF Warriors and clinicians from Pennsylvania State University, Temple University, Johns Hopkins University, St. Luke's, Christiana Care, Rutgers University, University of Pittsburgh, Thomas Jefferson University and Pulmonary Wellness & Rehabilitation Complex.

Project Information

Ilene Hollin, MPH, Ph.D.
Temple University Of The Commonwealth System of Higher Education
$99,999

Key Dates

January 2025
2023

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Last updated: April 3, 2024