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ImproveCareNow: Travel Toolkit

This toolkit was created by members of the Patient Advisory Council (PAC) of ImproveCareNow. The purpose of this toolkit is to share personal stories about traveling with Crohn’s disease and ulcerative colitis, answer questions, and identify tips and techniques that can make travel easier, safer and more comfortable. Use this to inform the creation of a people-centered, condition-specific tools for improving quality of life.

LikeJoanna Ball Added October 16, 2018

PCORnet Governance Materials

The table below contains an evolving compilation of governance resources and tools from across PCORnet. Charters and 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 Board Charter MS-PPRN: iConquerMS Research Committee Charter MS-PPRN: iConquerMS Research Committee Charter Approved and Signed NephCure Kidney Network: Steering Committee Charter PMS-DN: Parent Action Committee Charter IAN: Community Advisory Council Charter Codes of Conduct, Group Norms, and Standard Operating Procedures Greater Plains Collaborative: Engagement Meeting...

LikeJoanna Ball Added November 14, 2018

PCORnet Engagement Assessment Project: Findings and Recommendations

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  

LikeJoanna Ball Added October 5, 2018

PCORnet Communications and Marketing Materials

Below you'll find a list of communications and marketing materials networks have used in their outreach efforts. This list will continue to evolve as more resources are made available. Brochures, Flyers, and Posters ImproveCareNow: Tri-Fold Brochure Sample MS-PPRN: iConquerMS Brochure MS-PPRN: iConquerMS Fact Sheet REN: 3ft x 6ft Poster Template REN: Top 10 Reasons to Participate Infographics and Fact Sheets ADVANCE: Patient Engagement Panel (PEP) Recruitment Flyer CENA: Outreach Flyer Example CENA:Outreach Rack Card  Example IBD Partners: Citizen Scientist Infographic ImproveCareNow: OurSuccess Infographic Newsletters and Blogs ADVANCE: Newsletter Example COPD PPRN: Post Newsletter IBD Partners: October 2016 Newsletter Example ImproveCareNow:...

LikeJoanna Ball Added October 16, 2018

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

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

PMS-DN: Registry Insight Monthly Newsletter Sample

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.

LikeJoanna Ball Added September 6, 2018

PMS-DN: Parent Action Committee Charter

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.

LikeJoanna Ball Added September 6, 2018