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.
Policy Makers
Those who help craft public policy at any level of government, including federal, state, and local government officials; federal, state, and local units of government; and organizations that represent 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) 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.
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 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.
Supporting Diverse & Inclusive Engagement
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.
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 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.
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 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.
Successful engagement approaches across networks
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.
Patient and Community Advisory Committee (PCAC) Consultation Abstract Form
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.
CAPriCORN is a Network Partner of PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.
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 to hire or contract with 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.
REACHnet is a Network Partner in PCORnet®, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from PCORI.
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 seeking to work with ADVANCE or establish a stakeholder advisory and research review committee can use this webinar as a resource.