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.
Presentation/Webinar
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.
NORC Data Convenings Webinar: Expanding Social Determinants of Health Data across PCORnetExpanding Social Determinants of Health Data across PCORnet
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 priorities to enhance SDOH data capture for network-wide research.
Access the Social Determinants of Health Data across PCORnet 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.
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.
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.
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.
CAPriCORN’s Patient/Clinician Advisory Committee (PCAC)
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.