Resources

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 for use by other research networks or consortia seeking to include patients in governance.

This document provides a template to request sites to share PCORnet data elements. The guide includes details such as the impact of adding the data element for use in research projects, as well as the implications of each decision to share data.

The Local Studies Standard Operating Procedure (SOP) can be used for the documentation of process involved in the intake and management of studies entering through a Clinical Research Network (CRN) Front Door. From the inception of a request to the final close-out of the project, the document provides a detailed account of each stage, ensuring a comprehensive understanding of the workflow. This template can also be used for other SOP’s.

The INSIGHT Data Visualization Template provides templates of data visualizations that capture sex, age, ethnicity, and race breakdown of a CRN’s patient cohort. A list of data elements available to request is also available. These slides can be reformatted to suit a CRN’s available data elements and highlight strengths of the patient cohort.

This query of PCORnet® data resources explores the use of telehealth services among patients at partner sites. The query results aim to showcase how the PCORnet infrastructure can identify disparities in telehealth delivery, understand trends pre- and post-COVID-19, and illustrate how underserved populations managed chronic conditions using telehealth services throughout the pandemic.

Use this PCORnet-approved agreement to speed the contracting process for PCORI-funded studies. This pre-negotiated template agreement can serve as a starting point for prime and site investigator negotiations. The result is time-savings in the contracting process for PCORI-funded studies since sites are already negotiated in advance.

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 participate in an engagement opportunity.

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 engagement experts, researchers, and patient partners in the PaTH CRN.

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 people to participate in, and share the results of their research outside of academic journals. The tips here are meant to help you have the best possible experience partnering with researchers.

This form gives investigators and project teams a consolidated view of which sites participating in PCORnet maintain an IRB. It also provides the site Federal Wide Assurance (FWA) number and notates which sites have signed the SMART IRB reliance agreement and registered in the IRB Reliance Exchange (IREx) platform. This site list is updated regularly and eliminates the need for investigators and project teams to search for key information in several different places.

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.

This query of PCORnet data resources describes a population of patients with intellectual and developmental disabilities (IDD) with a healthcare encounter at a partner site. This query is the largest known, national-scale descriptive analysis of IDD populations using electronic health record (EHR) data. Query results inform how PCORnet can be used for patient-centered comparative effectiveness research (CER) research on IDD and to inform opportunities to enhance PCORnet IDD data resources.

This diagram shows a basic data flow in a study powered by PCORnet® and is intended for sites to include in their IRB application. Using this document, project teams can ensure consistency in IRB applications and speed IRB submission by providing a template for sites to quickly fill in the blanks based on data flow in their study.

This diagram shows a complex data flow in a study powered by PCORnet® and is intended for sites to include in their IRB application. Using this document, project teams can ensure consistency in IRB applications and speed IRB submission by providing a template for sites to quickly fill in the blanks based on data flow in their study.

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 their presentation to any group of stakeholders or patient partners.

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 in a community and research setting.

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 in determining which recruitment strategies are the most effective.

The INSIGHT Data Dictionary provides a detailed look at the data elements in INSIGHT's Central Repository, including their format and content.

The Data Sharing Agreement (DSA) is an approved PCORnet template for use by research institutions to speed prep-to-research queries. The DSA defines the standard terms to which the Coordinating Center for PCORnet® will adhere when data are sent from the Network Partners to the Coordinating Center. The DSA also contains a template showing the flow of data through the queries.

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 the most effective strategies we have used to date.

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 STAR CRN. This can include electronic health record data from the STAR CRN Common Data Model (CDM), or from other electronic health record data sources that are being accessed as part of a STAR engaged project.

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 patients and caregivers to support a patient-centered research process.

GPC Reusable Observable Study Environment (GROUSE): GROUSE is a Greater Plains Collaborative (GPC) project (as well as name of the data enclave) to obtain health insurance claims from the Center for Medicare and Medicaid Services through the Research Data Assistance Center (ResDAC). GPC currently have 2011-2017 Medicare data and 2011-2012 Medicaid data from 9 states in the GPC.

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 document can serve as guidance for stakeholders interested in patient-centered research.

This guide can be used to help successfully collect sexual orientation and gender identity (SOGI) data and document the data into the electronic health record (EHR). If you already have a system, but have encountered challenges and questions, this guide can help you address them. Even if your system is working smoothly, you will find resources and recommendations here that will help you move to the next level of data collection and analysis.

The PaTH Scholars Program was established to help researchers gain the skills and confidence needed to lead and participate in multi-site “real-world evidence” studies by mentoring and engaging scholars through hands-on participation alongside experienced PaTH researchers. This resource may be adapted by others wanting to create similar programs.

Researchers responded rapidly and collaboratively to answer COVID-19 questions by using PCORnet resources including a flexible coordinating center, a common data model, research-ready networks, and existing research studies that pivoted quickly. Researchers can use this resource to demonstrate how the resources of PCORnet can be used for studies that require fast answers.

Summary of the CDC's research on symptoms experienced more than 4 weeks after first being infected with the virus that causes COVID-19. Researchers studied data from electronic health records of 1.8 million adults and 300,000 children from 42 PCORnet network partners.

The PEDSnet Data Science Analyst course provides training on the structure and use of the PEDSnet CDM for research and approaches to study-specific data quality assessment.

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 clinical support staff. Content and format for the resources were informed by both clinic staff and research team members who conduct studies in clinical settings.

The webinar discussed opportunities for social determinants of health (SDOH) data within the PCORnet data infrastructure. Objectives included: discussing the current status of SDOH data collection by PCORnet Network Partners; opportunities to optimize accessibility and availability of individual-, population-, and community-based SDOH data to support PCORnet research; and engaging stakeholders on short- and long-term infrastructure projects to enhance SDOH data capture for network-wide research.

This toolkit offers equity-centered and creative approaches for authentic engagement in research. This toolkit can help uncover health priorities that matter to people and patients.

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) discuss tools and strategies for engaging stakeholders in research data and methodology topics, and their own experiences with this type of engagement from a researcher and patient/researcher perspective. Greg Merritt (PaTH Network) moderates.

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 unique tools to support patient partner engagement in research and explore the opportunities and challenges for scaling and sustaining these types of tools. Bray Patrick-Lake moderates the session.

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 patient groups.

Use this resource to review information, content, format, and structure of the HERO (Healthcare Worker Exposure Response & Outcomes) Research database and the relationship between its elements.

These slides can be used by researchers and organizations to inform policies and programs for increasing underrepresented population engagement in research and governance. Panelists Carolyn Shimmin, George and Fay Yee, and Freddie White-Johnson discussed creating an inclusive environment for engagement, strategies for stakeholder retention, and the importance of community-centered approaches. Lisa Stewart moderated.

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 used for stakeholders formulating documentation on engagement and recruitment activities.

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 engagement activities using an organizing framework to facilitate a deeper understanding of promising engagement activities and lays the foundation for future efforts to assess the quality and effectiveness of specific engagement practices.

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 questions, study design, research materials, and other items. Organizations seeking to work with OneFlorida or establish a similar program can use this webinar as a resource.

Researchers and organizations seeking information on engagement approaches can use this webinar as a resource. This recorded webinar features the PCORnet Engagement Workgroup and their efforts to develop a set of core principles for the network, the process followed for generating the principles, and next steps for implementation across PCORnet. 

The PaTH Clinical Research Network (CRN) Department of Bio-Medical Informatics team developed Daquery a tool used to deploy code, as well as to automate and archive network-wide Quality Assurance queries. The code is publicly available and may be useful to support other CRNs data processes.

The PaTH Clinical Research Network (CRN) designed this template as a guide for sharing the results of a published article with the general public.

The Chicago Area Patient-Centered Outcomes Research Network (CAPriCORN) Clinical Research Network (CRN) created this consultation abstract form for researchers to submit their study plans to the CAPriCORN Patient and Community Advisory Committee (PCAC) for the committee’s review. This template can be adapted by other advisory committees to review researchers’ study plans for input from the PCAC.

In this document, the Research Action for Health Network (REACHnet) describes the roles and scope of a patient-partner consultant. This resource can be used by researchers and others seeking to hire a patient partner to review and evaluate projects for patient-centeredness, participate in communication initiatives, prioritize research topics, and partake in other activities to improve stakeholders’ capacity to conduct patient-centered research.

 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 seeking to work with ADVANCE or establish a stakeholder advisory and research review committee can use this webinar as a resource.

 This webinar features the CAPriCORN Clinical Research Network (CRN) and their Patient/Clinician Advisory Committee (PCAC). The PCAC is comprised of patients and clinicians who advise CAPriCORN on data use, research priorities, and engagement processes. Other organizations seeking to work with CAPriCORN or establish a diverse stakeholder advisory committee can use this webinar as a resource.

The PEDSnet Scholars Program is a set of 24 webinars that help build core competencies in Learning Health System science.

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 researchers form research partnerships and conduct patient-centered outcomes research. Organizations seeking to work with PEDSnet or engage youth patients and their caregivers in research can use this webinar as a resource.

This webinar features the REACHnet Clinical Research Network (CRN) and their Research Ready training program. REACHnet’s Research Ready: Guide for Engaging Staff in Research Studies shares best practices for engaging clinic staff throughout the research process so clinicians can later implement study findings in clinical care settings. Other organizations seeking to work with REACHnet or engage clinicians in research can use this webinar as a resource.

This template was created by Kellie Walters, MPH, UNC-Chapel Hill, part of the STAR Network, as a welcome guide for PIs participating in PCORnet. It may be used as a framework for other networks.

Research Action for Health Network (REACHnet) created this Agenda Template with patient stakeholders’ input for use during study meetings that include stakeholders, such as patients, clinicians, and/or payers, to overcome some common challenges stakeholders face during study-related meetings. This resource can be utilized during all phases of the research process.

The PCORnet Common Data Model, developed by the PCORnet community, standardizes millions of data points from the Network’s diverse clinical information systems into a common format. As a result, users of PCORnet can ask the same question simultaneously to hundreds of disparate systems and receive a clear, reliable answer.

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, research questions, and general direction. Other organizations seeking to work with INSIGHT or establish patient and stakeholder accelerator programs can use this webinar as a resource.

This webinar features the Greater Plains Collaborative Clinical Research Network (CRN) and their Rapid PACE online engagement community for investigators. Through Rapid PACE, investigators can present their projects to and solicit feedback from a panel of patients and stakeholders. Other organizations seeking to work with GPC or establish patient and stakeholder reactor panels can use this webinar as a resource.

Researchers and organizations seeking to grow or expand a culture of research engagement in their own institutions can use this webinar as a resource. Panelists Al Richmond and Libby Hoy discuss the role of leadership in promoting engagement, share topics on promoting support for engagement, and provide strategies to help leaders influence engagement. Rebekah Angove moderates the session.

 This webinar features the STAR Clinical Research Network (CRN) and their Person Centeredness of Research Scale (PCoR Scale), a seven-item scale that uses 5-point Likert ratings to assess the extent of person-centeredness of research products. Other organizations seeking to work with STAR-CRN or rate the person-centeredness of research could use this webinar as a resource.

This webinar features the PaTH Clinical Research Network (CRN) and their Story Booth project. PaTH’s Story Booth project collects audio stories from patients and caregivers, helping to bring together patients who are interested in getting engaged with researchers who are looking to engage patients around specific topics. Other organizations seeking to work with PaTH or engage patients and stakeholders by collecting audio stories can use this webinar as a resource.

This template was created for study communications professionals as an example of how to create a central press release to share with sites to generate local media coverage for a study in multiple places.

This communications toolkit of tips, templates and materials for the HERO OneFlorida hub was compiled to increase awareness about the PCORnet® HERO Research Program and increase enrollment in the HERO Registry. Researchers can use toolkit emails, press releases, videos, flyers and social media content for their own programs as appropriate.

This document created by the PaTH Clinical Research Network (CRN) describes the responsibilities and structure of their PaTH Protocol Review Committee (PNPRC). Others can use this as a guide to create their own committee within their organization.

This document created by the PaTH Clinical Research Network (CRN) is a poster explaining how to retain patient involvement with a central International Review Board (IRB). Researchers can use this document to better understand the importance of incorporating patient partners in the IRB process.

The PaTH to Health Diabetes part of the PaTH Clinical Research Network (CRN) developed this paper to share the importance of engaging Patient Partners in this study.

The PaTH Clinical Research Network (CRN) developed this training to understand the importance of statistical tests in explaining study data, to become familiar with some statistical language, such as p values and null hypotheses and to be able to state some outcomes we are examining in the PaTH to Health Diabetes Study.

The PaTH Clinical Research Network (CRN) designed this training explaining the benefits and limitations of observational studies, common data issues and how to manage them via the PaTH to Health Diabetes Study.

The PaTH Clinical Research Network (CRN) designed this training explaining the benefits and limitations of observational studies, common data issues and how to manage them via the PaTH to Health Diabetes Study.

This slide deck was created by Kellie Walters, MPH, UNC-Chapel Hill, part of the STAR Network, to introduce the PCORnet Common Data Model to patient stakeholders. The slides can be repurposed for any non-technical audience.

The PaTH to Health Diabetes part of the PaTH Clinical Research Network (CRN) developed this Newsletter template to keep Patient Partners informed about the progress of this study and to foster continued engagement.

Research Action for Health Network (REACHnet) and LPHI discuss the role of clinic staff in patient-centered outcomes research. Through a project funded by the PCORI Eugene Washington Engagement Award, LPHI implemented pragmatic research studies that resulted in a training workbook to help clinic staff better understand the research process and eliminate implicit bias.

In this document, the Greater Plains Collaborative (GPC) Clinical Research Network (CRN) describes the role of a Patient Engagement Officer (PEO). This resource can be used by researchers and other stakeholders who are seeking to hire a PEO to improve engagement through identifying, recruiting, and supporting patient partners and liaising between engagement work of an organization and staff from local sites.

The Greater Plains Collaborative (GPC) describes the role of a Patient Advisors Council (PAC) patient or caregiver member in this template. This resource can be used by researchers and other stakeholder groups that are interested in creating a PAC to make their research more patient-centered.

PCORnet CMS Linkage Pilot Team has released a white paper to help others learn more about how to use Medicare claims data to support studies. The pilot team developed a process for using Medicare claims data to supplement PCORnet data in pragmatic clinical trials such as the ADAPTABLE study, which compares the effectiveness of different daily aspirin dosing for heart attack and stroke prevention. The project team describes the processes and data flows used successfully in the pilot.

PCORnet Demonstration Project Meeting discussions resulted in this list of recommendations for future projects. Consider these recommendations when developing your own collaborative, people-centered research study.

The PaTH Clinical Research Network (CRN) distributed this engagement survey among their clinicians, patient partner, and staff to assess when and how each individual was engaged in PaTH research. This survey can be used by others as a model for conducting an engagement assessment survey tool.

This tool developed by the Greater Plains Collaborative (GPC) Clinical Research network (CRN) is used to assess and determine the extent to which their network’s research has abided by the Community-Campus Partnership for Health guiding principles of engagement. Use this assessment tool to help you identify the extent to which your research has incorporated engagement principles.

This interview guide was developed by the CAPriCORN Clinical Research Network (CRN) to hold 30-minute semi-structured (confidential) phone interviews with Patient and Clinical Advisory Committee (PCAC) members and the CAPriCORN team. Stakeholders can use this guide to assess patient engagement in their own network.

This survey was developed by the CAPriCORN Clinical Research Network (CRN) to evaluate the progress of the Patient and Clinical Advisory Committee (PCAC) and identify areas for improvement. Use this to develop your own engagement survey for patients, caregivers, clinicians, and other community members.

The Greater Plains Collaborative (GPC) Clinical Research Network (CRN) developed and used these engagement meeting norms as a way to orient and continually guide stakeholder interactions in their community. Use this document to guide the development of meeting norms for your own community.

The PaTH Clinical Research Network (CRN) designed this toolkit to help collect rich and meaningful stories from communities. Materials in this toolkit include sample flyers, brochures, and interview prompts. This document can enable researchers and clinicians to understand and better serve the needs of their communities in immediate and tangible ways.

At the request of our patient partners, the PaTH Clinical Research Network (CRN)/PCORnet Bariatric Study teams developed this FAQ resource to help partnering stakeholders understand how they can contribute to scientific manuscripts. It can be adapted for other studies.

The PaTH Clinical Research Network (CRN) developed this guide to explain how electronic health record (EHR) data is captured, protected, and utilized for research purposes via a chocolate-making analogy.

This video on electronic health data utilizes the metaphor of making chocolate to clearly lay out how electronic health records can be used to anonymize data. It is a useful tool for clearly explaining EHRs and the privacy inherent in building a research network.

Muench and Le review the history of the rise in opioid addiction and overdose deaths, prior efforts to track pain medication prescriptions, and current efforts to organize the ADVANCE Clinical Research Network electronic health record data to more easily describe prescribing pattern changes that follow interventions at national, state, and clinic levels.

The PaTH Clinical Research Network (CRN) created these promotional postcards to be distributed to primary care providers, patient partners, and stakeholders to increase their exposure to PaTH's free biannual digital newsletter. Stakeholders can use this document to draft their own outreach materials.

This glossary can be used to understand the terms and acronyms used by PCORnet.

This document was developed by the PCORnet Engagement Committee and contains terms commonly used in engagement activities and guidance for how to discuss engagement in the clinical research space.

This Evaluation Plan from the "PCORnet Obesity Observational Research Initiative," was used to evaluate the different components of the research study. Use it as an example of how to evaluate your own research studies. Prepared by: John Holmes, PhD, Brie Purcell, MPH, and Beth Syat, MPH

This is the PCORnet Common Data Model Glossary. Use this to learn how terms are used in the context of the PCORnet Common Data Model.

The document provides guidance recommendations and strategies for biobank sustainability.

This presentation goes over the differences between intellectual property and data, Open Access, attributions, and Creative Commons licenses. Speaker: John Wilbanks