Engagement Tool and Resource Repository
PCORI is committed to advancing patient-centered, stakeholder-engaged research and the meaningful involvement of patients, caregivers, clinicians, and other healthcare stakeholders throughout the entire research process. We do this to ensure that the results of the studies we fund are relevant, trustworthy, and more likely to be used in practice. PCORI also supports the uptake of engagement practices and methodologies within the broader healthcare research community. To encourage the spread of these practices, we have assembled a repository of engagement-related tools and resources developed and used by PCORI awardees. This searchable peer-to-peer repository includes resources that can inform future work in PCOR and was developed based on a process, which you can learn more about here.
Displaying 151 - 175 of 415 results
Research Collaboration Expectations
The Patients, Advocates, and Rheumatology Teams Network for Research and Service (PARTNERS) Patient-Powered Research Network (PPRN) has developed this document which outlines the norms and expectations guiding their data sharing…
Engaging Partners in Research Process
This document by the Patients, Advocates, and Rheumatology Teams Network for Research and Service (PARTNERS) Patient-Powered Research Network (PPRN) details outreach strategies for communicating about research participation opportunities. This could…
Writing Team Onboarding Checklist
This onboarding checklist by the Patients, Advocates, and Rheumatology Teams Network for Research and Service (PARTNERS) Patient-Powered Research Network (PPRN) provides administrative staff a way to track parent/patient activity and…
Rare Organization Snapshot Template
This template was created by the Rare Epilepsy Network (REN) Patient-Powered Research Network (PPRN) to capture information about rare epilepsy organizations and their affiliated conditions within the network. Use this…
Patient and Clinician Advisory Committee (PCAC) Evaluation Interview Guides
This interview guide was developed by the Chicago Area Patient-Centered Outcomes Research Network (CAPriCORN) Clinical Research Network (CRN) to hold 30-minute semi-structured (confidential) phone interviews with Patient and Clinical Advisory…
Parent Action Committee Charter
This charter was developed by the Phelan-McDermid Syndrome Data Network (PMS_DN) Patient-Powered Research Network (PPRN), in partnership with the Phelan-McDermid Syndrome Foundation and their Parent Action Committee (PAC). The charter…
REN Newsletter -- August 2017
This e-newsletter by the Rare Epilepsy Network (REN) Patient-Powered Research Network (PPRN) can be used as an example when crafting messages to your stakeholders. REN formerly was a Network Partner…
Outreach Rack Card Example
The Community Engaged Network for All (CENA) Patient-Powered Research Network (PPRN) created this rack card to collect health data from patients to be used for research. Use this as a…
Registry Insight Monthly Newsletter Sample
This registry newsletter by the Phelan-McDermid Syndrome Data Network (PMS-DN) Patient-Powered Research Network (PPRN) highlights exciting updates related to the network's registry, including a link to their Registry 101 webinar…
Engagement of Multiple Stakeholder Groups
A recorded webinar by the Research Action for Health Network (REACHnet) Clinical Research Network (CRN) (formerly LaCDRN) summarizes their approaches to engaging multiple stakeholder groups. This webinar provides an overview…
Patient and Clinician Advisory Committee (PCAC) Evaluation Plan
This evaluation plan by the Chicago Area Patient-Centered Outcomes Research Network (CAPriCORN) Clinical Research Network (CRN) indicates the logic model and metrics used to evaluate their Patient and Clinician Advisory…
Patient and Clinical Advisory Committee (PCAC) Online Survey Form
This survey was developed by the Chicago Area Patient-Centered Outcomes Research Network (CAPriCORN) Clinical Research Network (CRN) to evaluate the progress of the Patient and Clinical Advisory Committee (PCAC) and…
Outreach Flyer Example
The Community Engaged Network for All (CENA) Patient-Powered Research Network (PPRN) created this flyer to collect health data from patients to be used for research. Use this as a template…
PEER Prelaunch Outreach Template
This outreach template was developed by PEER within the Community Engaged Network for All (CENA) Patient-Powered Research Network (PPRN) to provide strategies for coordinating outreach to community members. Use it…
PEER Outreach Plan Template
This outreach template was developed by PEER within the Community Engaged Network for All (CENA) Patient-Powered Research Network (PPRN) to provide strategies for coordinating outreach to community members. Use the…
Transformational Approaches to Achieving Health Equity through Engaged Research
This slide deck from a webinar by Consuelo H. Wilkins, MD, MSCI, examines components of diversity and provides a review of engaged research approaches needed to address disparities. This information…
2016 Patient Governor Group Interview Template
This document contains interview questions for prospective ArthritisPower (formerly AR-PoWER) Patient-Powered Research Network (PPRN) Patient Governors. This template can be used by researchers or research organizations when interviewing potential patient…
Patient Governor Group Application
This is an application form for those interested in joining the ArthritisPower (formerly AR-PoWER) Patient-Powered Research Network (PPRN) Patient Governor Group. This can be used by researchers or research organizations…
2016 Patient Governor Group Position Description
This document contains the program and position description for the Patient Governor Group of ArthritisPower (formerly AR-PoWER) Patient-Powered Research Network (PPRN). This can be used by researchers or research organizations…
Leveraging Social Media to Raise Awareness and Build Community
Social media specialists Joseph M. Coe, MPA, from the PCORnet® Patient-Powered Research Network (PPRN) ArthritisPower (formerly AR-PoWER) and M. Patricia McAdams, MS, from the PCORnet Coordinating Center explore the opportunities…
Stakeholder Contributions to Scientific Manuscripts and a Web-Based Platform for Engaging and Connecting Patients & Caregivers
The PCORnet ® Bariatric Study (PBS) team shares their approach to meaningfully including stakeholders in their study. Specifically, the team discusses their manuscript development process and how they leveraged Smart…
Stakeholder Engagement Policy
The Accessible Research Commons for Health (ARCH) Clinical Research Network (CRN) Stakeholder Engagement Policy outlines the network and engagement principles for promoting transparency of, and trust in, the ARCH network…
OCHIN Engagement and Recruitment Guide
This document is an introductory guide for those interested in working with the Accelerating Data Value Across a National Community Health Center (ADVANCE) Clinical Research Network (CRN). It describes engagement…
Researcher Collaboration Request Form
This is the form used by the American BRCA Outcomes and Utilization of Testing (ABOUT) Patient-Powered Research Network (PPRN) and Facing Our Risk of Cancer Empowered (FORCE) for research collaboration…
Governance Policy
This is the National Alzheimer's & Dementia Patient- & Caregiver-Powered Research Network (AD-PCPRN) governance policy, which highlights this Patient-Powered Research Network’s (PPRN) governance and operational policies. This document can be…
