Knowledge Repository

Explore resources for improving research through better practices

Data

Improve the quantity and quality of data used in your study with innovative resources and tools.

Engagement

Search best practices for engaging a variety of stakeholders throughout the research process.

Research

Explore innovative tools and models that can be used throughout every stage of your research project.

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Resource Type: Template
Audience: Researchers, Clinicians, Hospitals and Health Systems, Industry, Training Institutions

OCHIN-ADVANCE PEP Engagement Guide and Request Form

OCHIN-ADVANCE Clinical Research Network (CRN) developed a request form for researchers to engage with their Patient Engagement Panel (PEP). This can be used as a template by stakeholders when creating utilization request forms to engage…
Resource Type: Guide, Policy
Audience: Researchers, Training Institutions

OCHIN-ADVANCE Patient Engagement Panel Handbook

The OCHIN-ADVANCE Clinical Research Network (CRN) Patient Engagement Panel (PEP) Guidebook was created to describe engagement policies, procedures, benefits, and practices. This can be used to inform development of a governance framework for stakeholder participation…
Resource Type: Survey, Template
Audience: Researchers, Clinicians, Hospitals and Health Systems

Research Work Group Information Survey

This REDCap survey is a templated introductory survey to potential members of a research work group. The survey consists of demographic and research interest questions to better understand the expertise and interests of research team…
Resource Type: Template
Audience: Researchers, Clinicians, Hospitals and Health Systems, Industry, Training Institutions

Patient Engagement Panel (PEP) Proposal Review Template Presentation

OCHIN-ADVANCE Clinical Research Network (CRN) developed this template for researchers to use when discussing proposals with a Patient Engagement Panel (PEP). The template provides a structure for introducing the research study proposal, planned engagement, and…
Resource Type: Guide
Audience: Researchers, Clinicians, Hospital and Health System, Industry

OCHIN-ADVANCE Engagement and Recruitment Guide

This document is an introductory guide for those interested in working with the OCHIN-ADVANCE Clinical Research Network (CRN). It describes engagement and recruitment activities and gives points of contact within the network. This can be…
Resource Type: Guide, Manual, Checklist
Audience: Researchers, Clinicians, Industry, Hospitals and Health Systems

Patient Advisory Council (PAC) Handbook

This handbook describes the policies, procedures, benefits, and practices of the Greater Plains Collaborative (GPC) Patient Advisory Council (PAC) membership and engagement opportunities. This resource can be used by researchers and other stakeholder groups that…
Resource Type: Template
Audience: Researchers, Clinicians, Industry, Hospitals and Health Systems, Payers

Patient and Community Engagement Consultation Form

This Patient and Community Engagement Consultation form can be used to document requests from collaborators to use a clinical research network's patient and community engagement services. Requestors will complete the form to provide details about…
Resource Type: Guide, Checklist
Audience: Researchers

OCHIN-ADVANCE Engagement Core Values, Functions, and Metrics

OCHIN-ADVANCE outlined its priorities and metrics for engagement across patient and caregiver groups in this snapshot. This resource can be used by researchers and other stakeholder groups seeking to improve their level of engagement with…
Resource Type: Presentation/Webinar, Communications and Outreach
Audience: Researchers, Clinicians, Hospitals and Health Systems, Training Institutions

Building Patient Partnerships and Engagement for Large, Data-focused Research Networks and Projects

This presentation from OCHIN-ADVANCE Clinical Research Network (CRN) discusses different engagement strategies for networks, and reviews their patient engagement panel program. Other researchers can adapt the strategies and programs to use within their own networks.…
Resource Type: Guide, Template
Audience: Researchers, Clinicians, Hospitals and Health Systems

Patient Partner Recruitment & Selection Toolkit

This toolkit includes resources for recruiting and selecting a network patient partner, including a Patient Partner Position Description & Application Instructions and an Interview Guide & Evaluation. The toolkit may be adapted to local context…
Resource Type: Template, Guide
Audience: Researchers

PaTH Community Partner Outreach Template

PaTH developed a template to help researchers seeking to build engaged teams. Researchers are asked to complete the template to provide information that potential patient partners can use to evaluate whether they would like to…
Resource Type: Guide, Checklist
Audience: Researchers, Clinicians, Industry, Hospitals and Health Systems

Tip Sheet for Researchers on Engaging Community Groups and Patient Partners

This document is intended for researchers who are considering doing community engagement, particularly those who intend to establish a longstanding relationship with a community group or patient partner. It presents tips and advice gleaned from…
Resource Type: Guide, Checklist
Audience: Patients

Tip Sheet for Partnering with Researchers

Patient and community partnered research is becoming more common because community members have valuable insight that can help researchers develop research questions that matter the most to the community, design studies that are easier for…
Resource Type: Guide, Manual
Audience: Researchers, Clinicians, Industry, Hospitals and Health Systems

STAR CRN Glossary of Acronyms & Terms

The STAR Clinical Research Network has developed a glossary of research acronyms and terms to help others who may encounter these terms in the course of their research. Access the Glossary of Acronyms & Terms…
Resource Type: Template, Guide
Audience: Researchers

REACHnet’s Presentation Outline for Presenting a Study to Patient Partners

This template gives researchers an outline of content to prepare when presenting a study to patient partners for feedback. While the slide background is specific to Health in Our Hands (HiOH), study teams can adapt…
Resource Type: Template, Guide
Audience: Researchers, Clinicians, Industry, Hospitals and Health Systems

INSIGHT Recruitment CONSORT Diagram

The INSIGHT Recruitment CONSORT Diagram is a template to update the research team, Co-Investigator(s), Principal Investigator(s) (PI) and other stakeholders on recruitment strategies, methods of contact and results. The consort diagram can assist research teams…
Resource Type: Guide
Audience: Researchers, Clinicians, Hospitals and Health Systems, Patients, and Training Institutions

Recruitment and Retention Strategies for PCORnet Studies: Learnings from INSIGHT CRN

Effective recruitment and retention strategies that are adaptable to the patient population and changing macro-environment are essential to the success of clinical research studies. INSIGHT CRN’s “Recruitment and Retention Strategies for PCORnet Studies” guide offers…
Resource Type: Guide, Communications and Outreach
Audience: Clinicians, Researchers, Hospitals and Health Systems, Payers, Industry

Engagement Guidance & Resources for Patient-Centered “Data-Only” Studies

Patient-centered studies require a rightsized stakeholder engagement plan. The STAR CRN provides engagement guidance and resources for data-only studies such as observational, retrospective data abstractions that use EHR data from the sites participating in the…
Resource Type: Policy
Audience: Researchers, Clinicians, Hospital and Health System, Payers, Industry

Patient and Stakeholder Engagement Policy

The Research Action for Health Network (REACHnet) Clinical Research Network (CRN) has developed a comprehensive Engagement Policy to advance the mission of PCORI to meaningfully engage patient and other stakeholders in the research process. This…
Resource Type: Guide, Presentation/Webinar
Audience: Researchers, Clinicians, Hospitals and Health Systems, Training Institutions

Research Ready Training Resources for Staff Engagement

Clinical staff seeking to improve engagement in clinic-based research studies and increase their knowledge of basic research principles can use these training materials and best practices for implementing studies in clinical settings and communicating with…
Resource Type: Study Material, Guide
Audience: Researchers, Patients

GRID Toolkit for Prioritizing Health Research Topics

This toolkit offers creative approaches for authentic engagement in research. This toolkit can help uncover health priorities that matter to people and patients. Access the toolkit here.
Resource Type: Presentation/Webinar
Audience: Training Institutions, Researchers, Hospitals and Health Systems, Industry, Patients, Policy Makers

Building Stakeholder Capacity to Engage around Technical Content

This webinar could be a helpful resource for researchers and organizations working to engage patients in discussions and decision-making related to complex and highly technical topics. Panelists Monique Does (Kaiser Permanente) and Liz Salmi (OpenNotes)…
Resource Type: Presentation/Webinar
Audience: Training Institutions, Researchers, Hospitals and Health Systems, Industry, Patients, Policy Makers

Digital Tools for Facilitating Patient/Partner Engagement

This townhall-style webinar can be used by researchers and organizations interested in learning more about using digital tools and strategies to engage patients and other stakeholders in research. Panelists Shilpa Venkatachalam and Dana Goodlett discuss…
Resource Type: Evaluation, Guide, Communications and Outreach
Audience: Researchers, Policy Makers, Patients, Industry, Hospitals and Health Systems, Training Institutions

Partnerships & Infrastructure to Support Patient & Stakeholder Engagement: A Scan of PCORnet Practices

This report examines established and emerging engagement activities currently being used by PCORnet networks. Sourced from a literature and document scan and network interviews with key staff and partners, this report captures and categorizes existing…
Resource Type: Presentation/Webinar
Audience: Training Institutions, Researchers, Hospitals and Health Systems, Industry, Patients, Policy Makers

OneFlorida’s Citizen Scientist Program

This webinar features the OneFlorida Clinical Research Network (CRN) and their Citizen Scientist program. Through the Citizen Scientist program, community members are engaged as meaningful collaborators throughout the research process and provide feedback on research…
Resource Type: Communications and Outreach, Template
Audience: Researchers, Clinicians, Hospitals and Health Systems, Industry

Research Findings for the Community

The PaTH Clinical Research Network (CRN) designed this template as a guide for sharing the results of a published article with the general public. Access the research findings here.
Resource Type: Communications and Outreach, Guide
Audience: Researchers, Hospitals and Health Systems, Industry, Patients, Policy Makers, Training Institutions

Patient Partner Position Description

In this document, the Research Action for Health Network (REACHnet) Clinical Research Network (CRN) describes the roles and scope of a patient-partner consultant. This resource can be used by researchers and other stakeholder groups seeking…
Resource Type: Presentation/Webinar
Audience: Training Institutions, Researchers, Hospitals and Health Systems, Industry, Patients, Policy Makers

ADVANCE’s Patient Engagement Panel (PEP)

This webinar features the ADVANCE Clinical Research Network (CRN) and their Patient Engagement Panel (PEP). Through the PEP, patients can advise ADVANCE on network-level issues and provide input to researchers on ongoing projects. Other organizations…
Resource Type: Presentation/Webinar
Audience: Training Institutions, Researchers, Hospitals and Health Systems, Industry, Patients, Policy Makers

PEDSnet’s Family and Youth Research Education Program (FYREworks)

This webinar features the PEDSnet Clinical Research Network (CRN) and their Family and Youth Research Education program (FYREworks). FYREworks is a set of interactive and web-based trainings and toolkits designed to help youth, caregivers, and…
Resource Type: Presentation/Webinar
Audience: Training Institutions, Researchers, Hospitals and Health Systems, Industry, Patients, Policy Makers

INSIGHT’s Accelerator Model of Engagement

This webinar features the INSIGHT Clinical Research Network (CRN) and their Accelerator model of engagement. Through the Accelerator model, INSIGHT convenes topic-specific teams of patients and other stakeholders to rapidly provide guidance on INSIGHT’s policies,…