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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 research in which they participate. Outline of the process: Study team notifies PNPRC when materials will be ready for review A PNPRC meeting is scheduled for at least 1 week after receipt of study materials Approximately 1 week after the PNPRC meeting, a summary document...

LikeJoanna Ball Added September 6, 2018

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.

LikeJoanna Ball Added September 6, 2018

Decoding the PaTH of EHR data: How it’s collected, how it’s protected via a chocolate making analogy

This whiteboard video and accompanying visual guide explains how electronic health record (EHR) data is captured, protected, and utilized for research purposes via the PaTH network. This process is illustrated through a chocolate-making analogy, given the PaTH to Health: Diabetes study’s main investigative site is in Hershey, PA.  

LikeJoanna Ball Added September 6, 2018

Best Practice Sharing Session: Sourcing, cataloguing, and disseminating research innovations across PCORnet

This Best Practice Sharing Session discusses the process the Research Innovations Workgroup used to identify innovation needs in the network, detailed their use of the Commons to facilitate cross-network collaboration, and showcased the resulting products. Five areas of interested surfaced and the workgroup leveraged the PCORnet Commons as a collaboration platform – encouraging networks to upload information on tool development and implementation. Uploads and traffic were tracked and the workgroup decided to curate two guidance documents – one on direct-to-consumer recruitment and one on dissemination of results. The guidance documents were released and serve the dual purpose of disseminating current...

LikeJoanna Ball Added 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 included two rating rounds with a statistical feedback/online discussion round in between. The Panels focused on weight management/obesity, heart failure, and Kawasaki disease. Citation:  Dmitry Khodyakov, Sean Grant, Daniella Meeker, Marika Booth, Nathaly Pacheco-Santivanez, Katherine K Kim; Comparative analysis of stakeholder experiences with an online approach...

LikeJoanna Ball Added September 6, 2018

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