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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), Kathy Kim (pSCANNER) and Consuelo Wilkins (Mid-South)...

LikeJoanna Ball Added September 18, 2018

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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.

LikeJoanna Ball Added August 30, 2018

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.

LikeJoanna Ball Added August 30, 2018

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.

LikeJoanna Ball Added August 30, 2018

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.

LikeJoanna Ball Added August 30, 2018

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

LikeJoanna Ball Added August 30, 2018

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 August 30, 2018

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 August 30, 2018

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  

LikeJoanna Ball Added August 29, 2018

NAM: Improving Collaboration among Health Communication, Health Education, and Health Literacy

In this NAM (National Academy of Medicine) Perspectives discussion paper, the authors note the  framework of meaning-centered communication within health communication, health education, and health literacy and suggest it provides a basis to advance understanding and collaboration. Authors urge health communication, health education, and health literacy professionals to reach out across boundaries to transform health communication practices and research. Published: July 10, 2017 Citation: Allen, M., E. Auld, R. Logan, J. Henry Montes, and S. Rosen. 2017. Improving collaboration among health communication, health education, and health literacy. NAM Perspectives.Discussion Paper, National Academy of Medicine, Washington, DC. doi: 10.31478/201707c

LikeJoanna Ball Added August 29, 2018