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.
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 advocacy groups into a patient or public format.
NephCure Kidney Network's (NKN) 2017 and 2018 Annual Reports are linked below. Use them to learn more about NephCure Kidney Network. NephCure Kidney Network Patient Registry Annual Report - March 2016-March 2017 NephCure Kidney Network Patient Registry Annual Report - March 2017-March 2018
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
This survey was conducted with the NephCure Kidney Network's (NKN) multi-stakeholder Steering Committee to measure current engagement and deepen future engagement. Use this resource as a guide as you develop engagement surveys in your own community. 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 engaging diverse community stakeholders and academics. Published: Fall 2009