All Engagement Resources

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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. Published: September 6, 2018

LikeJoanna Ball Added February 27, 2019

PaTH: How EHR Data is Collected and 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. Published: September 6, 2018

LikeJoanna Ball Added February 13, 2019

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. Published: May 1, 2017 Citation:  Dmitry Khodyakov, Sean Grant, Daniella Meeker, Marika Booth, Nathaly Pacheco-Santivanez, Katherine K Kim; Comparative analysis of stakeholder experiences...

LikeJoanna Ball Added March 1, 2019

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 March 1, 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 March 4, 2019


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 February 27, 2019