All Engagement Resources

Sort by:

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. Published: April 2018

LikeJoanna Ball Added January 30, 2019

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. Published: September 6, 2018

LikeJoanna Ball Added January 30, 2019

PCORnet Multi-stakeholder Engagement Special Supplement

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),...

LikeJoanna Ball Added February 4, 2019

Tags

PARTNERS: Research Collaboration Expectations

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. Published: August 30, 2018

LikeJoanna Ball Added January 30, 2019

PARTNERS: Engaging Partners in Research Process

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. Published: August 30, 2018

LikeJoanna Ball Added January 30, 2019

PARTNERS: Writing Team Onboarding Checklist

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. Published: August 30, 2018

LikeJoanna Ball Added January 30, 2019

PARTNERS: Writing Team Orientation Packet

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. Published: August 30, 2018

LikeJoanna Ball Added January 30, 2019

NephCure Kidney Network: Annual Reports

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 Published: March 2017 and March 2018

LikeJoanna Ball Added January 30, 2019

NephCure Kidney Network: Steering Committee and Co-Chair Engagement Interview Guides

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

LikeJoanna Ball Added January 30, 2019

NephCure Kidney Network: Steering Committee Survey

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

LikeJoanna Ball Added January 30, 2019