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.

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Data Science Analyst Training

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.

Access the Data Science Analyst course.

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 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.

Access the resources here.

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.

Access the resource here.

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.

Access the resource here.

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.

Learn about the program here.

Access the Citizen Scientist Program and Curriculum here.

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.

Access the resource here.

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 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.

Access the resource here.

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, 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.

Access the resource here.