Tag Archives: stakeholder engagement

Best Practice Sharing Session: Engagement in PCORnet 1.0: Results of the Engagement Assessment Project

PCORnet has prioritized engagement as a key function in transforming healthcare research. However, there was little investment in capturing and scientifically assessing engagement activities in PCORnet. The Genetic Alliance Coordinating Center set out to capture, review and publish the resources, best practices, and lessons learned from PCORnet and its networks. Presented: November 20, 2018 Speakers: […]

PaTH Network Protocol Review Committee (PNPRC)

The PaTH Network Protocol Review Committee (PNPRC) meets to provide an inclusive pre-IRB review of all multi-site network studies going through a central IRB process. Composed of one patient or community partner and one IRB-affiliated member from each participating site, the PNPRC review ensures each of many diverse communities and institutions have input on the […]

PaTH: Survey to Assess Engagement

This engagement survey was distributed to PaTH clinicians, patient partner, and staff.  Results were compiled and distributed to all original recipients. The stakeholder work group reviewed the findings and made recommendations to the PaTH Steering Committee. The PaTH network has also provided the Data Dictionary for the survey for your convenience. Published: September 6, 2018

pSCANNER: Comparative analysis of stakeholder experiences with an online approach to prioritizing patient-centered research topics

In this Journal of the American Medical Informatics Association article from pSCANNER, the research team describes how they explored patient/caregiver experiences with a high-tech online engagement approach for patient-centered research prioritization, compared their experiences with those of professional stakeholders, and identified factors associated with favorable participant experiences. The team conducted 8 online modified-Delphi (OMD) panels that […]

NephCure Kidney Network: Steering Committee and Co-Chair Engagement Interview Guides

The NephCure Kidney Network (NKN) conducted one-on-one calls with the NKN multi-stakeholder Steering Committee members and co-chairs to both measure current engagement and deepen future engagement. Guides for each group are linked below. Steering Committee Co-Chair Guide Steering Committee Member Guide  Published: 2015

CPPRN: Community-Partnered Participatory Research: How we can work together to improve community health

This supplement of Ethnicity & Disease was written in collaboration by Community-Partnered Participatory Research Network (CPPRN) investigators and community partners. This Special Issue focuses on the Community-Partnered Participatory Research model (CPPR) created by Loretta Jones, MA and Dr. Kenneth Wells and presents a guidebook based on the premise that the science-community practice gap can be closed by […]