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...
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.
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.
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...
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 PCORnet Multi-stakeholder Engagement Special Issue to Medical Care has been published online and was developed in collaboration with leadership from the PCORnet Phase I Patient and Consumer Engagement Task Force. The goal was to highlight PCORnet Phase I patient and multi-stakeholder engagement across the PCORnet partner networks. Manuscripts cover topics such as: novel engagement approaches and methods network recruitment and retention policy development informed consent research topic prioritization PCORnet partner networks who contributed to this Special Issue include: ADVANCE AR-PoWER (ArthritisPower) CCFA Partners Greater Plains Collaborative Health eHeart and the ADAPTABLE Team Mid-South CDRN MoodNetwork NYC-CDRN pSCANNER REACHnet A special thanks also to Sarah Daugherty (Senior Program Officer, PCORI), Jaye Bea Smalley (former Engagement Officer at PCORI), Mark Helfand (OHSU), Kathy Kim (pSCANNER) and Consuelo Wilkins (Mid-South)...
PARTNERS aims to improve the lives of children with rheumatic diseases through research that matters to patients and families. To achieve this aim, PARTNERS has developed this document which outlines the norms and expectations guiding their data sharing process. The document also details who is eligible to work with PARTNERS and the expectations of researchers.
This document details the outreach strategies PARTNERS for communicating about research participation opportunities and describes how they engage families who would like to join a study team or partner in their work.
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.