The table below contains an evolving compilation of governance resources and tools from across PCORnet. Charters & By-laws IBD Partners: 2016 Patient Governance Council By-laws PRIDEnet: Participant Advisory Committee Bylaws PRIDEnet: The PRIDE Study Participant Advisory Committee PAC By-laws COPD PPRN: Governing Board Charter Template MS-PPRN: iConquerMS Engagement Committee Charter Approved Signed MS-PPRN: iConquerMS Governing […]
This report supports understanding of the current landscape of engagement in PCORnet, identifies emerging promising practices, and provides a framework and baseline for future work aimed at assessing network engagement. Published: September 2018
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 […]
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.
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.
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 […]
This is a sample of the April 2018 Registry Insight newsletter from the Phelan-McDermid Syndrome Data Network (PMS-DN) The Phelan-McDermid Syndrome Foundation (PMSF) creates and disseminates a monthly newsletter to members. One article in the newsletter is a piece called the Registry Insight which highlights exciting updates related to the network’s registry.
This charter was developed in partnership by the Phelan-McDermid Syndrome Foundation and their Parent Action Committee (PAC). The charter lays out the roles and responsibilities for members of the committee and the time commitment we expected for patient-centered governance. Use this as guidance when developing a committee charter in your community.
The PARTNERS Writing Team Onboarding Checklist provides the PARTNERS administrative staff a way to track participant activity and ensure they are equipped to take on their roles and responsibilities.
The PARTNERS Writing Team Orientation Packet provides team members an overview of their roles and responsibilities and the importance of their participation. The PARTNERS Writing Team is part of the Outreach and Communication Committee of PARTNERS. The team consists of parents and patient volunteers who like to write and want to help turn information from doctors and […]