Other

Measurement Matters: Refining and Validating a Patient-Centered Outcomes Research Engagement Measure

Posted on by Jodi Snare

Study Updated 03/06/2024

 

Study Design: Development and initial validation of a PCOR engagement tool
PCORnet Infrastructure: Collaboration, Engagement, Single IRB
Principal Investigator: Marc A. Cohen
Site Name: University of Massachusetts, Boston
PCORnet® Network Partner: External
Funder: Patient-Centered Outcomes Research Institute (PCORI)
Funding Date: 2023
Study Duration: 2023 – 2025
Participating Clinical Research Networks: GPC, PaTH, STAR
Therapeutic Area: Other, Engagement
Condition: Other; Science of Engagement Award to develop and validate an engagement tool on engagement quality and selected outcomes
Population: PCORI lead investigators and/or those who manage PCORI projects
Status: Not yet recruiting

Research Question(s):

  1. Can we develop a concise way to measure the extent to which researchers engaging older adults in research projects are doing so effectively and can we assign a score that represents a value for the quality of engagement?
  2. Having done this, can we then apply this new measure to score projects that are engaging older adults in research and see whether higher quality engagement scores are related to better short and medium term PCOR project outcomes?

Semantic Data Quality Standards for Multi-Center Clinical Research Studies and Networks

Posted on by Jodi Snare

Study Updated 03/05/2024

Study Design: Methods to improve study design; methods to support data research networks
PCORnet Infrastructure: Collaboration, CDM (+supplemental data), Engagement, Single IRB
Principal Investigator: L. Charles Bailey
Site Name: The Children’s Hospital of Philadelphia
PCORnet® Network Partner: PEDSnet
Funder: Patient-Centered Outcomes Research Institute (PCORI)
Funding Date: 2021
Study Duration: 2021 – 2026
Participating Clinical Research Networks: INSIGHT, PEDSnet, REACHnet
Therapeutic Area: Other, Data Quality Standards
Condition: Data quality assessment, data quality analysis, data quality reporting, standards development
Population: This proposal does not focus on a specific population
Status: Active, not recruiting

Research Question(s):

  1. Can we find ways to more accurately describe how suitable data are to answer a specific research question?
  2. What are the tools that can be used across studies to consistently describe whether the data are high quality?